Factors related to met needs for rehabilitation 6 years after stroke.

INTRODUCTION: Research on stroke rehabilitation mainly concerns the first year of recovery, and there is a lack of knowledge regarding long-term rehabilitation needs and associated factors. AIM: The aim was to explore the perceived needs for rehabilitation services of people six years after stroke and factors associated with having rehabilitation services needs met.
METHODS: The study was a 6-year follow up of a prospective study on the rehabilitation process after stroke. Data on perceived needs for rehabilitation, personal factors, disease specific factors, and patient-reported disability were collected through face-to-face interviews in the participants' homes. Logistic regression models were created to explore associations between having rehabilitation services needs met in 11 problem areas (dependent variable) and the independent variables: involvement in decisions regarding care and treatment, sex, age, sense of coherence, self-defined level of private financing, stroke severity, frequency of social everyday activities, perceived impact of stroke, and life satisfaction.
RESULTS: The 121 participants had a mean age of 63 years at stroke onset and 58% were men. In all problem areas the majority (53-88%) reported having needs met at six years after stroke, however 47% reported unmet needs regarding fatigue and 45% regarding mobility. A lower perceived impact on participation was found to be associated with having rehabilitation services needs met in seven problem areas: mobility, falls, pain, fatigue, concentration, memory, and sight. The strongest association for having needs met was found for the independent variable, involvement in care and treatment, within the three problem areas mobility, falls, and speaking.
CONCLUSION: In a long-term perspective, there were several modifiable factors associated with having rehabilitation services needs met. The most prominent were perceived involvement in care and treatment, and perceived participation. These factors had a stronger association with having rehabilitation services needs met than disease specific factors six years after stroke.

Introduction

Stroke is a major health problem due to high prevalence, long-lasting disability [1] and social impact [2]. Even though progress has been made in diagnostics and acute treatment, a stroke often has a significant negative impact on a person’s health and frequently leads to a wide range of activity limitations and participation restrictions, even in a long-term perspective [3, 4]. Hence, active rehabilitation early after a stroke is recommended [5, 6]. It is recommended that rehabilitation after stroke should include a holistic perspective, the active involvement of people with stroke, and the services of a multidisciplinary team [6]. The team should have professional knowledge, skills and experience to work in partnership with people with stroke and their close relations [7]. However, rehabilitation interventions and research in rehabilitation after stroke often focus on the first year of recovery, and there is less knowledge on functioning in everyday life and the needs for rehabilitation and support in the long-term. Nevertheless, studies show that there are persistent long-term consequences after stroke [8-10], indicating a need to increase the understanding of how such consequences can be reduced. Furthermore, many people, with persisting declined functioning post stroke, report unmet needs for rehabilitation in many different areas [11-16].

Factors that have been reported to be associated with unmet needs for rehabilitation after stroke constitute higher [14] or lower age at stroke onset [15, 17], a more severe stroke [11], higher perceived impact of stroke [11], pain [14], depression [14, 15, 17], fatigue [17] dependency in activities of daily living (ADL) [14, 15], greater disability [18-20] and not returning to work [7]. Met needs have been reported to be associated with shared decision-making in goal-setting during rehabilitation [12, 21], number of rehabilitation contacts during the first 4 months [20], and contact with rehabilitation throughout the first year after stroke [22]. However, only a few of the studies mentioned above have a longer perspective than one year after stroke.

Previous studies on factors associated with unmet needs after stroke mainly focus on disease-related factors, impairments and activity limitations as assessed by health professionals. However, as needs identified by health professionals have been reported not to capture all those identified by people with stroke [23], the individual’s perspective should also be included as recommended by WHO [24]. In partnership with the healthcare professionals, the patients with stroke should be actively involved in the rehabilitation process, be able to express their needs and values, and have the opportunity to make informed decisions about their rehabilitation [21, 25–28]. Involving patients in shared decision-making has been reported to increase patient satisfaction and motivation, and create a greater sense of ownership [12, 29–32]. Thus, when exploring factors underlying the many unmet needs after stroke, not only disease-specific factors and assessments performed by health professionals, but also the patients’ perspectives, should be included.

Therefore, the aim of the present study was to explore the perceived needs for rehabilitation services of people six years after stroke, as well as factors (personal, disease specific, and patient-reported) associated with having rehabilitation services needs met.

Methods

Participants and procedure

This study was a 6-year follow up of the study Life After Stroke phase 1 (LAS-1), a prospective study of the rehabilitation process during one year after stroke described in detail previously [11, 22, 33]. Originally, 349 patients diagnosed with stroke were consecutively recruited from the stroke units at Karolinska University Hospital between 2006 and 2007. For the 6-year follow-up, participants from LAS-1 who were still alive were contacted, informed about the study and asked to participate. After written informed consent had been obtained, data were collected in one session through face-to-face interviews in the participant’s home by research assistants trained for the purpose (occupational therapists or physiotherapists) with extensive experience in rehabilitation after stroke. The participants in the present study were persons included in LAS-1 who agreed to participate in the six-year follow-up and who answered the Stroke Survivor Needs Survey Questionnaire (SSNSQ) [13].

Ethical permission was applied for and then granted by the Regional Ethics Committee in Stockholm both for the original study and the 6-year follow-up study (applications: 2005/1462-31/3, 2011/1573-32 and 2012/428-32).

Measurements

Dependent variable

To assess the participants’ perceived needs after stroke, the SSNSQ [13] was used. The questionnaire consists of 44 closed questions with response categories to assess the level of change or needs in seven domains. The SSNSQ was developed to assess perceived needs after stroke and included questions from validated questionnaires. It was validated in a review process by the King’s College London Stroke Research Patients and Family Group (a service user research advisory group) [13]. In the present study, 11 questions within the domain “health after stroke” were used concerning needs for rehabilitation services in the problem areas: mobility, falls, incontinence, pain, fatigue, emotion, concentration, memory, speaking, reading, and sight. Participants were asked to choose from five response categories in relation to support received. For example, ‘Since your stroke, have you had enough treatment to help improve your mobility (e.g. walking, moving your legs)?’—1. Yes definitely; 2. Yes to some extent; 3. No, I did not get enough treatment; 4. I did not want treatment; 5. I did not have any mobility difficulties. Answers were categorized into needs met (alternatives 1 and 4–5), and needs met to some extent, or unmet (alternatives 2–3).

Independent variables

One additional question from the SSNSQ, domain “health after stroke”, about involvement in decisions regarding care and treatment was included. Participants were asked to choose from five response categories in relation to involvement: ‘Since your stroke, have you been involved as much as you have wanted to be in decisions about your care and treatment?—1. Yes definitely; 2. Yes to some extent; 3. No, but I would have liked to have been more involved; 4. No, but I did not mind; 5. Don’t know/Can’t say; 6. I have not had any care or treatment since my stroke. Answers were categorized into involved (alternatives 1 and 4) and involved to some extent or not involved (alternatives 2–3).

Data on age and sex were retrieved from the medical records. To assess sense of coherence (SOC) the 13-item version of the SOC scale was used [34]. The SOC scale is a self-report questionnaire consisting of 13 items rated on a seven-graded Likert scale. The total score ranges from 13 (weak SOC) to 91 (strong SOC). An adult individual’s SOC is considered to be relatively stable over time [34]. Self-defined level of private financing (sufficient, just sufficient, insufficient) was collected through interview. In the analyses, the answers were aggregated into sufficient and just sufficient/insufficient). Using the Barthel Index [35], which has shown good agreement with other stroke severity measures, stroke severity was categorized as recommended: mild (scores 50–100), moderate (scores 15–49) or severe (scores ≤14) [36]. In the analyses, the scores were aggregated into mild and moderate/severe. Data on frequency of social everyday activities were collected using the Frenchay Activities Index (FAI) [37]. The FAI consists of 15 items and the score is based on the frequency with which an activity has been performed during the previous 3 or 6 months. The total score ranges from 0 (inactive) to 45 (very active). To assess perceived impact of stroke, the Stroke Impact Scale (SIS) 3.0 was used [38]. The SIS consists of 8 domains: strength, memory and thinking, emotion, communication, activities in daily life, mobility, hand function, and participation. The SIS is made up of 59 items and scores range from 0 (maximum impact) to 100 (no impact). In addition, perceived recovery after stroke is rated on a visual analogue scale ranging from 0 (no recovery) to 100 (full recovery). Data on life satisfaction was collected using the Life Satisfaction Checklist (LiSat-11) [39]. The LiSat-11 is a self-report questionnaire that assesses life satisfaction with the global item “Life as a whole” and ten domain specific items. Answer alternatives range from 1 (very dissatisfied) to 6 (very satisfied). In the present study, the overall item “Life as a whole” was included and categorized as recommended: not satisfied (alternatives 1 to 4) and satisfied (alternatives 5 and 6) [40].

All data were collected at the six-year follow-up except for data on stroke severity and age which were collected within the first week after stroke onset, and data on SOC which were collected at 12 months post stroke.

Analyses

To analyse differences between participants with met and unmet needs related to the 11 problem areas, univariable logistic regression analyses were performed. Eleven logistic regression models were created to explore associations between having rehabilitation services needs met in regard to each problem area, respectively (dependent variable), and the independent variables. In all models the independent variables were: involvement in decisions on care and treatment, age, sex, SOC, self-defined level of private financing, frequency of social everyday activities, SIS domain corresponding to the dependent variable or stroke severity in cases where no corresponding SIS domain was identified, SIS participation, SIS recovery, and life satisfaction. Participants with missing data in a model were excluded from that particular model. A stepwise forward selection was used where variables with p≤0.05 were entered and those with p≥0.10 were removed. The Enter method was then used to verify a final model with more patients since several variables with missing data may have been excluded. Significance level was set to 0.05. SAS® System 9.4, SAS Institute Inc., Cary, NC, USA was used for the statistical analyses.

Results

At the 6-year follow-up 121 participants remained in the study; 166 were deceased, 44 declined to take part and 18 could not be traced. Additionally, 11 had not answered the SSNSQ, thus 110 participants were included in the present study. Their mean age at stroke onset was 63 years, ranging from 24 to 85 years, 64 (58%) were men, and 91 (83%) had a mild stroke severity. The mean age of all 349 participants in the original study group at stroke onset was 72 years, ranging from 24 to 95 years, 188 (54%) were men, and 213 (61%) had a mild stroke severity. The mean age at stroke onset of the 239 participants from the original study group who were deceased or non-responders was 76 years, ranging from 37 to 95 years, 125 (52%) were men, and 123 (51%) had a mild stroke severity. There was no difference between study participants and non-responders in sex (p = 0.203) but the non-responders were significantly older than the participants (p<0.001).

Table 1 presents the characteristics of participants with met and unmet needs related to the 11 problem areas categorized with respect to the independent variables, and p-values from the univariable analyses. In all problem areas the majority reported having met needs, although 47% reported unmet needs related to fatigue problems and 45% related to mobility problems. Participants who perceived a lower impact on participation and a higher recovery after stroke were more likely to report having rehabilitation services needs met in all problem areas except sight.

Table 1

Characteristics of participants and univariable analyses of met and unmet needs by problem area.

	Need met	Need met to some extent or Unmet*	P-value
Mobility problems, n (%)	60 (55)	49 (45)
Age, median	65	63	0.885
Sex, n
Men/Women	39/21	25/24	0.142
Sense of coherence, median	81	78	0.095
Private financing, n
Enough/Just enough or Not enough	41/19	20/29	0.005
SIS Mobility, median	96	88	<0.001
Frenchay Activities Index, median	32	26	0.006
Involvement in care and treatment, n
Involved/Involved to some extent or Not involved	43/12	16/24	<0.001
SIS Participation, median	92	69	<0.001
SIS Recovery, median	90	64	<0.001
Life Satisfaction, n
Satisfied/Not satisfied	37/18	21/23	0.052
Falls, n (%)	76 (70)	33 (30)
Age, median (IQR)	64	62	0.923
Sex, n
Men/Women	46/30	18/15	0.561
Sense of coherence, median	78	78	0.095
Private financing, n
Enough/Just enough or not enough	48/28	13/20	0.024
SIS Mobility, median	96	82	<0.001
Frenchay Activities Index, median	32	24	0.002
Involvement in care and treatment, n
Involved/Involved to some extent or Not involved	48/18	11/18	0.002
SIS Participation, median	89	63	<0.001
SIS Recovery, median	85	60	<0.001
Life Satisfaction, n
Satisfied/Not satisfied	45/25	13/16	0.077
Incontinence problems, n (%)	85 (78)	24 (22)
Age, median	64	66	0.862
Sex, n
Men/Women	51/34	13/11	0.609
Sense of coherence, median	81	68	0.007
Private financing, n
Enough/Just enough or not enough	53/32	8/16	0.014
Stroke severity
Mild/Moderate or Severe	78/7	13/11	<0.001
Frenchay Activities Index, median	32	17	<0.001
Involvement in care and treatment, n
Involved/Involved to some extent or Not involved	47/28	12/8	0.827
SIS Participation, median	86	61	<0.001
SIS Recovery, median	80	50	<0.001
Life Satisfaction, n
Satisfied/Not satisfied	50/28	8/13	0.036
Pain, n (%)	88 (81)	21 (19)
Age, median	65	62	0.044
Sex, n
Men/Women	55/33	8/13	0.047
Sense of coherence, median	81	69	0.008
Private financing, n
Enough/Just enough or not enough	53/35	8/13	0.071
Stroke severity, n
Mild/Moderate or Severe	76/12	15/0	0.106
Frenchay Activities Index, median	30	31	0.514
Involvement in care and treatment, n
Involved/Involved to some extent or Not involved	51/27	7/9	0.111
SIS Participation, median	80	63	0.002
SIS Recovery, median	84	63	0.003
Life Satisfaction, n
Satisfied/Not satisfied	48/30	10/10	0.351
Fatigue problems, n (%)	57 (53)	51 (47)
Age, median	66	61	0.060
Sex, n
Men/Women	31/26	32/19	0.380
Sense of coherence, median	80	76	0.659
Private financing, n
Enough/Just enough or not enough	37/20	23/28	0.040
Stroke severity, n
Mild/Moderate or Severe	49/8	40/0	0.308
Frenchay Activities Index, median	32	30	0.864
Involvement in care and treatment, n
Involved/Involved to some extent or Not involved	35/15	23/21	0.080
SIS Participation, median	88	90	0.004
SIS Recovery, median	90	89	0.036
Life Satisfaction, n
Satisfied/Not satisfied	30/20	28/19	0.966
Emotional problems, n (%)	78 (71)	32 (29)
Age, median	66	62	0.025
Sex, n
Men/Women	46/32	18/14	0.793
Sense of coherence, median	81	70	0.007
Private financing, n
Enough/Just enough or not enough	49/29	12/20	0.017
SIS Emotion, median	94	86	0.083
Frenchay Activities Index, median	32	27	0.256
Involvement in care and treatment, n
Involved/Involved to some extent or Not involved	43/24	16/12	0.520
SIS Participation, median	88	66	0.003
SIS Recovery, median	80	70	0.003
Life Satisfaction, n
Satisfied/Not satisfied	43/25	15/16	0.167
Concentration problems, n (%)	70 (65)	37 (35)
Age, median	68	59	0.003
Sex, n
Men/Women	43/27	19/18	0.316
Sense of coherence, median	81	70	0.007
Private financing, n
Enough/Just enough or not enough	45/25	14/23	0.010
SIS Memory and thinking, median	95	80	0.049
Frenchay Activities Index, median	31	30	0.580
Involvement in care and treatment, n
Involved/Involved to some extent or Not involved	44/18	14/18	0.012
SIS Participation, median	89	73	0.006
SIS Recovery, median	83	74	0.035
Life Satisfaction, n
Satisfied/Not satisfied	38/24	20/15	0.689
Memory problems, n (%)	76 (71)	31 (29)
Age, median	65	61	0.129
Sex, n
Men/Women	44/32	18/13	0.987
Sense of coherence, median	81	69	0.028
Private financing, n
Enough/Just enough or not enough	48/28	12/19	0.023
SIS Memory and thinking, median	95	80	0.050
Frenchay Activities Index, median	32	26	0.061
Involvement in care and treatment, n
Involved/Involved to some extent or Not involved	48/20	10/16	0.005
SIS Participation, median	84	72	0.017
SIS Recovery, median	80	68	0.042
Life Satisfaction, n
Satisfied/Not satisfied	42/25	15/15	0.243
Speaking difficulties, n (%)	85 (78)	24 (22)
Age, median	64	59	0.192
Sex, n
Men/Women	51/34	12/12	0.383
Sense of coherence, median	79	77	0.704
Private financing, n
Enough/Just enough or not enough	50/35	10/14	0.140
SIS Communication, median	94	81	0.003
Frenchay Activities Index, median	31	30	0.174
Involvement in care and treatment, n
Involved/Involved to some extent or Not involved	52/22	7/14	0.003
SIS Participation, median	84	63	0.005
SIS Recovery, median	80	63	0.004
Life Satisfaction, n
Satisfied/Not satisfied	48/29	10/12	0.160
Reading difficulties, n (%)	95 (88)	13 (12)
Age, median	64	65	0.445
Sex, n
Men/Women	57/38	6/7	0.347
Sense of coherence, median	80	70	0.032
Private financing, n
Enough/Just enough or not enough	56/39	4/9	0.065
Stroke severity, n
Mild/Moderate or Severe	83/0	8/2	0.024
Frenchay Activities Index, median	32	27	0.127
Involvement in care and treatment, n
Involved/Involved to some extent or Not involved	55/31	4/5	0.260
SIS Participation, median	84	58	0.003
SIS Recovery, median	80	60	0.046
Life Satisfaction, n
Satisfied/Not satisfied	55/33	3/8	0.036
Sight difficulties, n (%)	88 (82)	19 (18)
Age, median	64	62	0.645
Sex, n
Men/Women	52/36	10/9	0.606
Sense of coherence, median	81	71	0.151
Private financing, n
Enough/Just enough or not enough	50/38	10/9	0.739
Stroke severity, n
Mild/Moderate or Severe	75/13	15/4	0.500
Frenchay Activities Index, median	32	28	0.655
Involvement in care and treatment, n
Involved/Involved to some extent or Not involved	50/28	8/8	0.294
SIS Participation, median	84	66	0.053
SIS Recovery, median	80	70	0.391
Life Satisfaction, n
Satisfied/Not satisfied	50/31	8/9	0.267

*Need met to some extent: Mobility problems (20%), Falls (14%), Incontinence problems (12%), Pain (15%), Fatigue problems (19%), Emotional problems (14%), Concentration problems (9%), Memory problems (6%), Speaking difficulties (8%), Reading difficulties (4%), Sight difficulties (7%).

Results from the logistic regression analyses are shown in Table 2. A lower perceived impact on participation was found to be associated with having rehabilitation services needs met in seven problem areas: mobility, falls, pain, fatigue, concentration, memory, and sight. However, the strongest association was found for the independent variable, involvement in care and treatment, within the three problem areas mobility, falls, and speaking.

Table 2

Final logistic regression models for the association of the independent variables and met needs with regard to the 11 problem areas, odds ratios (OR) and 95% confidence intervals (CI).

Problem area Independent variables	Variable categorization	Odds for met needs OR (95% CI)
Mobility, n = 71
Involvement in care and treatment	Involved	8.11 (2.28–28.84)
	Involved to some extent/Not involved	1
SIS participation	Decreased impact	1.05 (1.01–1.09)
SIS mobility	Decreased impact	1.07 (1.01–1.14)
Area under the receiver operating characteristic curve = 0.857
R-Square = 0.494
Falls, n = 71
Involvement in care and treatment	Involved	11.96 (2.24–63.78)
	Involved to some extent/Not involved	1
SIS participation	Decreased impact	1.07 (1.03–1.12)
SIS mobility	Decreased impact	1.08 (1.02–1.15)
Area under the receiver operating characteristic curve (ROC) = 0.907
R-Square = 0.597
Incontinence, n = 71
Sense of coherence (SOC)	Increased SOC	1.10 (1.02–1.19)
Frenchay Activities Index (FAI)	Increased FAI	1.18 (1.07–1.30)
Area under the receiver operating characteristic curve (ROC) = 0.932
R-Square = 0.557
Pain, n = 71
Age	Increased age	1.05 (1.00–1.11)
SIS participation	Decreased impact	1.06 (1.02–1.10)
Area under the receiver operating characteristic curve (ROC) = 0.802
R-Square = 0.280
Fatigue, n = 70
Age	Increased age	1.04 (1.00–1.08)
SIS participation	Decreased impact	1.03 (1.01–1.06)
Area under the receiver operating characteristic curve (ROC) = 0.714
R-Square = 0.161
Emotional, n = 71
Sense of coherence (SOC)	Increased SOC	1.07 (1.02–1.12)
SIS recovery	Increased recovery	1.04 (1.01–1.07)
Area under the receiver operating characteristic curve (ROC) = 0.801
R-Square = 0.354
Concentration, n = 70
Age	Increased age	1.05 (1.01–1.10)
SIS participation	Decreased impact	1.05 (1.02–1.09)
Area under the receiver operating characteristic curve (ROC) = 0.783
R-Square = 0.291
Memory, n = 70
SIS participation	Decreased impact	1.03 (1.00–1.06)
Area under the receiver operating characteristic curve (ROC) = 0.652
R-Square = 0.100
Speaking, n = 71
Involvement in care and treatment	Involved	10.28 (2.24–47.30)
	Involved to some extent/Not involved	1
SIS communication	Decreased impact	1.03 (1.00–1.07)
Area under the receiver operating characteristic curve (ROC) = 0.767
R-Square = 0.323
Reading, n = 71
Stroke severity	Mild	15.25 (2.30–101.27)
	Moderate/Severe	1
Area under the receiver operating characteristic curve (ROC) = 0.719
R-Square = 0.224
Sight, n = 70
SIS participation	Decreased impact	1.04 (1.00–1.07)
Area under the receiver operating characteristic curve = (ROC) 0.712
R-Square = 0.117

Discussion

This study shows that although the majority report met needs for rehabilitation services six years after stroke, between 19% and 47% report unmet needs within all problem areas studied. The largest proportions of unmet needs were found within the areas mobility and fatigue. Several factors, which varied between the 11 problem areas, were associated with having rehabilitation services needs met. However, the most prominent factors were lower perceived impact on participation and involvement in care and treatment. Since these factors may be modifiable, the results are highly important and of great clinical significance for rehabilitation after stroke.

Almost half of the participants reported unmet needs in relation to fatigue and mobility. These results are in line with previous studies showing that fatigue and mobility problems are common long after the stroke occurred and impact negatively on many aspects of functioning, in particular participation in everyday life [41-44]. Since rehabilitation targeting mobility can yield beneficial effects [45] even in the chronic phase after stroke [46], our results indicate that there is a need for recurrent long-term rehabilitation. For people with remaining disability after stroke one option to maintain mobility might be to have increased access to and possibilities for physical activity in the community [47]. There is also an urgent need to develop and evaluate interventions to reduce fatigue because the evidence base for the effectiveness of interventions targeting fatigue is limited [48].

Participants with a low perceived impact on participation were more likely to report rehabilitation services met needs in seven of the problem areas. Whilst several studies highlight participation as crucial after stroke and with potential to contribute to essential aspects such as a sense of belonging and purpose, identity, autonomy, independence and confidence [49], less is known about how participation best should be supported. Support and services that include social and leisure activities have been prioritized among persons with stroke about one-year post stroke [50]. Moreover, a meta ethnographic review [49] of social participation suggests that persons with stroke build confidence to participate in activities by learning from both health professionals and other persons with stroke, and by their own trying and practicing. Rehabilitation services have been described as having a too strong biomedical focus [51] compared to the patients’ focus on regaining former roles and on psychosocial needs. A strong focus not only on participation in rehabilitation, creation of opportunities for peer-learning, but also access to long-term support to promote participation after stroke, could potentially contribute to the positive perception of participation and reduce unmet long-term needs for rehabilitation [52].

Findings in the present study indicate that having been involved in care and treatment can contribute to reporting met rehabilitation services needs related to mobility, falls and speaking. Involvement in discussions, planning and decisions on care and treatment are core components in person-centred care [53], patient participation [54] and shared decision-making [55, 56]. Shared decision-making aims to support patients’ self-determination and autonomy by providing information and supporting deliberation. It has been suggested that defined steps in shared decision-making involve choice talk, option talk and decision talk together with the use of decision tools [57]. There is no information on the extent to which the participants in the present study were involved in such shared decision-making nor on healthcare services that can be defined as person-centred. However, in previous studies both patients [58] and staff [59] have described the informal parts of the patient-staff relationship, such as human connectedness and incorporating the patients’ experiential knowledge in daily rehabilitation sessions, as more important than formal decision-making and care planning to achieve experiences of involvement. Furthermore, it has been proposed that there are temporal aspects to consider as well. A review has suggested that patient-centred goal setting might not be suitable for all stages of rehabilitation and for all patients. Instead the process of goal setting needs to be tailored to individual patients’ needs and preferences, which may change with time [28]. Nevertheless, experiences of involvement is a factor that most likely can be influenced by creating conditions that safeguard and support both formal and informal involvement in care and rehabilitation [56-58]. Considering the large proportion of people with stroke experiencing long-term unmet needs for health services [11-16] and the findings in this study, there is an urgent need to safeguard and support the patients’ formal as well as informal involvement in care and rehabilitation.

The main strengths of the study are the long-term follow-up; the fact that all stroke patients admitted to Karolinska University Hospital’s stroke units were eligible for inclusion in the original LAS-1 study; the use of face-to-face interviews for data collection which made it possible to include participants with various disabilities; and valid and reliable outcome measures covering both personal, disease specific and patient-reported outcomes. The mean age at stroke onset of the sample in the current 6-year follow-up was lower and a larger proportion had a mild stroke, in comparison with participants from the original LAS-1 study who were deceased or non-responders. The 48% deceased participants in our sample is comparable to results from large register based studies in Sweden, thus our sample could be considered representative for the general stroke population six years after stroke [60]. A limitation of the study might be the sample size, and that all variables with a p-value > 0.10 in the univariable analysis were excluded from the model regardless of their potential clinical significance, which may have limited the opportunity to discover other factors associated with met needs for rehabilitation. Further, we can not rule out that the participants’ perceived needs may have been influenced by other independent variables than those included in the analyses.

Conclusion

In a long-term perspective, there were several modifiable factors associated with met needs for rehabilitation services. The most prominent were perceived involvement in care and treatment, and perceived participation. These factors were more important for met rehabilitation services needs than disease specific factors six years after stroke.

2 Oct 2019

PONE-D-19-19035

Factors related to met needs for rehabilitation 6 years after stroke

PLOS ONE

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Reviewer #4: Yes

**********

2. Has the statistical analysis been performed appropriately and rigorously?

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Reviewer #2: Yes

Reviewer #3: No

Reviewer #4: No

**********

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Reviewer #1: Yes

Reviewer #2: Yes

Reviewer #3: Yes

Reviewer #4: Yes

**********

4. Is the manuscript presented in an intelligible fashion and written in standard English?

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**********

5. Review Comments to the Author

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Reviewer #1: This is an important follow up study in rehabilitation after stroke. The authors describe that 6 years after stroke up to 47% of patients have unmet needs regarding fatigue or mobility.

This mono-centric and descriptive follow up of a previousrehabilitations study in stroke brings light into long termoutcome of stroke rehabilitation. Structure and language of the the manuscript are very well. However, before publication in a journal there are a few points that need to be adressed.

1. The study population is only around a third of the original study, and in regard of stroke onset there is a difference of almost 10 years. Still the study would benefit from somecomparison to the earlier data, i.e. to the data of all theincluded individuals in the first study.

2. Authors combine «need met to some extend» with «unmetneeds» which results in a bias to a negative outcome. Authorseither should use three groups: fully, partly, none met or clearly define to what percentage patients reporterd partlyunmet needs, counting as unmet.

3. Table 1 is rather loaded with data (6.5 pages) ; find a wayfor a better way of presenting the data.

Minor:

1. Title one is misspelled (« Factors related to meet needs …) anyway reviewer would prefer short title.

2. another limitation is the monocentric and local study design which therefore prevents a generalisability of the findings.

Reviewer #2: It is very researched and written manuscript which can be definitely considered for publication. My congratulations and appreciations to the authors.

Reviewer #3: Factors related to met needs for rehabilitation 6 years after stroke" (PONE-D-19-19035).

Reviewer comments

The paper by Ytterberg et al. reports on the association between met needs for rehabilitation 6 years after stroke and predefine factors. These factors included perceived needs for rehabilitation, personal factors, disease specific factors, and patient-reported disability factors. The paper is well written. Information are presented succinctly and clearly. The authors’ main conclusions are that the majority of participants reported having needs met at six years after stroke and that the most prominent factors associated with rehabilitation needs six years after the index stroke were perceived involvement in care and treatment, and perceived participation, which the authors pointed out were more important than disease specific factors. I invite the authors to consider the following suggestions which could improve the quality of the manuscript.

Minor points:

In the abstract, rather than saying that “the majority reported…” the authors may want to provide actual figures on met needs. This seems to be the bulk of their findings.

Also in the abstract, the authors conclude that “these factors were more important for having rehabilitation services needs met than disease specific factors six years after stroke”. This statement does not appear to be supported by the results provided in the summary.

I would also suggest that the introduction be shortened and to the point.

In the methods section, it would be useful to provide details about the validation (internal and external) of the questionnaire used in the study.

Specific difficulties inherent to administering the questionnaire to patient with disability from stroke (e.g. aphasia) should also be mentioned as well as approaches to mitigate them.

Giving the number and length of the questionnaires, it would be useful to specify how many sessions were needed to complete them as this has implications on the quality of answers provided.

Major points:

In the statistical analysis, it appears that all variables with a p-value > 0.10 in the univariate analysis were excluded from the model regardless of their potential clinical significance? For example, the variable sex was not included in the model but it is well known that stroke outcome is worse in women. This approach may have missed important predictors.

Given the large number of non-respondents, I suggest to compare the clinical and demographic characteristics of participants with those of the patients who declined to respond or could not be traced with the study participants. This would inform the reader about efforts from the authors to check for a potential non-respondents bias.

The authors report that stroke severity, which appears to be the only clinical predictor used in this analysis, was recorded using the Barthel Index. Stroke severity is often measured using the National Institute of Health stroke scale (NIHSS). The Barthel Index measures patient’s activity of daily living. In the context of the current study, the Barthel would ideally have been measured at 6-year follow up.

Reviewer #4: The study was conducted to explore the perceived needs for rehabilitation services of people six years after stroke and factors associated with having rehabilitation services needs met using data from a 6-year follow up of a prospective study on the rehabilitation process after stroke. This is interesting study and has advantage in terms long-term follow-up with face to face interviews in the participant's home by clinically experienced RA. However, i have few comments that need further clarification from the authors.

1. Under measurements and statistical analyses sections - authors mention that all measurements data were collected at the six-year follow-up except for data on stroke severity which were collected at stroke onset, and data on SOC which were collected at 12 months post stroke. The analyses were conducted using logistic regression models. Since this is a prospective study with 6 years follow up where certain variables were measured at different time point (i.e stroke severity, SOC), it is not clear how authors deals with effect of different time age of onset up to 6 years follow up on the outcomes variables as well as time-varying and invarying independent variables in their analysis. There is possibility that those with early or late onset stroke or longer or shorter duration of post stroke might have different needs for rehabilitation? In terms of time-varying and invarying effect from independent variable, there is possibility that stroke severity at stroke onset and level of SOC at 12-month post stroke might varied over time and at 6 months follow-up. I am not sure whether authors have captured those information in their study and have taken into account these effects in their analysis.

2. In current analysis, stepwise selection method followed by entered method was implemented in logistic regression models. There is bias and shortcoming when using stepwise approach in regression analysis which has been reported in literature (i.e Whittingham et al 2006. Why do we still use stepwise modelling in ecology and behaviour?J Anim Ecol. 2006 Sep;75(5):1182-9). Hence, it would be good if authors can clarify why authors decided using stepwise method plus entered method in their analysis instead of entered method alone!

In stepwise forward selection method, according to the authors variables with p =<0.05 were entered and P=> 0.10 were removed. It is not clear how variables with p >0.05 and p <0.10 were treated in the subsequent analysis?

Is there any significant interaction terms between predictors were found in current study?

There is no information about missing data and how it was handled in current analysis. It would be if authors can elaborate more about missing data and how missing data was treated in current analysis.

In Results section, authors mention that 44 declined and 18 could not be traced. I was wondering if authors can determine whether those who declined and could not be traced are different from those who remained in the study in terms of their baseline characteristics. Usually this information is very useful in order to ensure that the current results are not bias and can be generalize to the whole population cohort of the study.

**********

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Reviewer #1: No

Reviewer #2: Yes: Sureshkumar Kamalakannan

Reviewer #3: Yes: Alain Lekoubou

Reviewer #4: No

[NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files to be viewed.]

While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email us at figures@plos.org. Please note that Supporting Information files do not need this step.

28 Oct 2019

October 22, 2019

Dear Dr Vaingankar, Academic Editor at PLOS ONE

Thank you for the invitation to submit a revised version of our manuscript PONE-D-19-19035 entitled “Factors related to met needs for rehabilitation 6 years after stroke”. We would like to thank the reviewers for their comments which we believe have been very helpful to improve the manuscript. Below are our responses to the reviewers’ comments and alterations made in the manuscript, marked yellow.

We would also like to add the funder “the Promobilia Foundation” in our financial disclosure.

Please do not hesitate to contact me for any additional requests regarding this submission.

Sincerely,

Charlotte Ytterberg, corresponding author

Reviewer #1: This is an important follow up study in rehabilitation after stroke. The authors describe that 6 years after stroke up to 47% of patients have unmet needs regarding fatigue or mobility.

This mono-centric and descriptive follow up of a previous rehabilitation study in stroke brings light into long term outcome of stroke rehabilitation. Structure and language of the manuscript are very well. However, before publication in a journal there are a few points that need to be addressed. Authors’ response:

1. The study population is only around a third of the original study, and in regard of stroke onset there is a difference of almost 10 years. Still the study would benefit from some comparison to the earlier data, i.e. to the data of all the included individuals in the first study. In addition to the presented comparisons of sex and age, comparison of stroke severity between the study population and the original study have been added. Further, comparisons between the study population and those from the original study who were deceased or non-responders have been added. Results, first paragraph:

Their mean age at stroke onset was 63 years, ranging from 24 to 85 years, 64 (58%) were men, and 91 (83%) had a mild stroke severity. The mean age of all 349 participants in the original study group at stroke onset was 72 years, ranging from 24 to 95 years, 188 (54%) were men, and 213 (61%) had a mild stroke severity. The mean age at stroke onset of the 239 participants from the original study group who were deceased or non-responders was 76 years, ranging from 37 to 95 years, 125 (52%) were men, and 123 (51%) had a mild stroke severity.

2. Authors combine «need met to some extend» with «unmet needs» which results in a bias to a negative outcome. Authors either should use three groups: fully, partly, none met or clearly define to what percentage patients reported partly unmet needs, counting as unmet. Proportions of participants with needs met to some extent have been added in a footnote in Table 1:

3. Table 1 is rather loaded with data (6.5 pages); find a way for a better way of presenting the data. We agree that Table 1 is very long. One alternative would be to present only statistically significant variables for each problem area, however this would limit the interpretability. Another alternative would be to present 11 separate tables, one for each problem area. However, we are not certain that this would improve the readability. We would be grateful for any suggestion from the editor.

However, we believe the title of Table 1 was too lengthy, it has now been shortened:

Table 1. Characteristics of participants and univariable analyses of met and unmet needs by

problem area.

1. Title one is misspelled (« Factors related to meet needs …) anyway reviewer would prefer short title. We believe the title is spelled correctly. It refers to needs that have been met i.e., met needs.

2. another limitation is the monocentric and local study design which therefore prevents a generalisability of the findings. In the original LAS-I study, patients from the three stroke units at Karolinska University Hospital were eligible for inclusion i.e., more than one centre. However, to enable interpretation of generalisability of the findings we have added the following text in Discussion, last paragraph:

The 48% deceased participants in our sample is comparable to results from large register based studies in Sweden, thus our sample could be considered representative for the general stroke population six years after stroke (60).

Reviewer #2: It is very researched and written manuscript which can be definitely considered for publication. My congratulations and appreciations to the authors.

Reviewer #3: The paper by Ytterberg et al. reports on the association between met needs for rehabilitation 6 years after stroke and predefine factors. These factors included perceived needs for rehabilitation, personal factors, disease specific factors, and patient-reported disability factors. The paper is well written. Information are presented succinctly and clearly. The authors’ main conclusions are that the majority of participants reported having needs met at six years after stroke and that the most prominent factors associated with rehabilitation needs six years after the index stroke were perceived involvement in care and treatment, and perceived participation, which the authors pointed out were more important than disease specific factors. I invite the authors to consider the following suggestions which could improve the quality of the manuscript. Authors’ response:

Minor points:

In the abstract, rather than saying that “the majority reported…” the authors may want to provide actual figures on met needs. This seems to be the bulk of their findings. The following has been added in the result section of the abstract:

In all problem areas the majority (53-88%) reported having needs met at six years after stroke, however 47% reported unmet needs regarding fatigue and 45% regarding mobility.

Also in the abstract, the authors conclude that “these factors were more important for having rehabilitation services needs met than disease specific factors six years after stroke”. This statement does not appear to be supported by the results provided in the summary. We have clarified this statement in the conclusion section of the abstract:

These factors had a stronger association with having rehabilitation services needs met than disease specific factors six years after stroke.

I would also suggest that the introduction be shortened and to the point. We agree with that and introduction should be short and to the point. However, we believe that length of the introdution is reasonable (1½ pages) to introduce the topic for readers not fully informed about the topic of the manuscript.

In the methods section, it would be useful to provide details about the validation (internal and external) of the questionnaire used in the study.

Specific difficulties inherent to administering the questionnaire to patient with disability from stroke (e.g. aphasia) should also be mentioned as well as approaches to mitigate them. The following information has been added in Methods/Measurements:

The SSNSQ was developed to assess perceived needs after stroke and included questions from validated questionnaires. It was validated in a review process by the King's College London Stroke Research Patients and Family Group (a service user research advisory group) (13).

And in the discussion, last paragraph:

the use of face-to-face interviews for data collection which made it possible to include participants with various disabilities

Giving the number and length of the questionnaires, it would be useful to specify how many sessions were needed to complete them as this has implications on the quality of answers provided. The following has been added in Methods/Participants and procedures:

After written informed consent had been obtained, data were collected in one session through face-to-face interviews

Major points:

In the statistical analysis, it appears that all variables with a p-value > 0.10 in the univariate analysis were excluded from the model regardless of their potential clinical significance? For example, the variable sex was not included in the model but it is well known that stroke outcome is worse in women. This approach may have missed important predictors. We agree with the reviewer that this may be seen as a limitation and have added the following in the last paragraph of the discussion:

A limitation of the study might be the sample size, and that all variables with a p-value > 0.10 in the univariable analysis were excluded from the model regardless of their potential clinical significance, which may have limited the opportunity to discover other factors associated with met needs for rehabilitation. Further, the participants’ perceived needs may have been influenced by major incidents during the 6-year period, not related to the initial stroke incident.

Given the large number of non-respondents, I suggest to compare the clinical and demographic characteristics of participants with those of the patients who declined to respond or could not be traced with the study participants. This would inform the reader about efforts from the authors to check for a potential non-respondents bias. The following information has been added in the results, first paragraph:

Their mean age at stroke onset was 63 years, ranging from 24 to 85 years, 64 (58%) were men, and 91 (83%) had a mild stroke severity. The mean age of all 349 participants in the original study group at stroke onset was 72 years, ranging from 24 to 95 years, 188 (54%) were men, and 213 (61%) had a mild stroke severity. The mean age at stroke onset of the 239 participants from the original study group who were deceased or non-responders was 76 years, ranging from 37 to 95 years, 125 (52%) were men, and 123 (51%) had a mild stroke severity.

And in Discussion, last paragraph:

The 48% deceased participants in our sample is comparable to results from large register based studies in Sweden, thus our sample could be considered representative for the general stroke population six years after stroke (60).

The authors report that stroke severity, which appears to be the only clinical predictor used in this analysis, was recorded using the Barthel Index. Stroke severity is often measured using the National Institute of Health stroke scale (NIHSS). The Barthel Index measures patient’s activity of daily living. In the context of the current study, the Barthel would ideally have been measured at 6-year follow up. The following information has been added in Methods/Measurements/Independent variables, second paragraph:

Using the Barthel Index (35), which has shown good agreement with other stroke severity measures, stroke severity was categorized as recommended: mild (scores 50–100), moderate (scores 15–49) or severe (scores ≤14) (36).

Reviewer #4: The study was conducted to explore the perceived needs for rehabilitation services of people six years after stroke and factors associated with having rehabilitation services needs met using data from a 6-year follow up of a prospective study on the rehabilitation process after stroke. This is interesting study and has advantage in terms long-term follow-up with face to face interviews in the participant's home by clinically experienced RA. However, i have few comments that need further clarification from the authors. Authors’ response:

1. Under measurements and statistical analyses sections - authors mention that all measurements data were collected at the six-year follow-up except for data on stroke severity which were collected at stroke onset, and data on SOC which were collected at 12 months post stroke. The analyses were conducted using logistic regression models. Since this is a prospective study with 6 years follow up where certain variables were measured at different time point (i.e stroke severity, SOC), it is not clear how authors deals with effect of different time age of onset up to 6 years follow up on the outcomes variables as well as time-varying and invarying independent variables in their analysis. There is possibility that those with early or late onset stroke or longer or shorter duration of post stroke might have different needs for rehabilitation? In terms of time-varying and invarying effect from independent variable, there is possibility that stroke severity at stroke onset and level of SOC at 12-month post stroke might varied over time and at 6 months follow-up. I am not sure whether authors have captured those information in their study and have taken into account these effects in their analysis. All participants were followed up six years after stroke onset. However, we agree with the reviewer that the participants may have experienced incidents during the 6-year period that had an impact on their perceived needs. Thus, the following text has been added in the discussion, last paragraph:

Further, we can not rule out that the participants’ perceived needs may have been influenced by other independent variables than those included in the analyses.

The different time points for data-collection have been clarified in the last paragraph of Measurements:

All data were collected at the six-year follow-up except for data on stroke severity and age which were collected at stroke onset, and data on SOC which were collected at 12 months post stroke.

Further, information about SOC has been added in Methods/Measurements/Independent variables, second paragraph:

An adult individual’s SOC is considered to be relatively stable over time (34).

2.In current analysis, stepwise selection method followed by entered method was implemented in logistic regression models. There is bias and shortcoming when using stepwise approach in regression analysis which has been reported in literature (i.e Whittingham et al 2006. Why do we still use stepwise modelling in ecology and behaviour?J Anim Ecol. 2006 Sep;75(5):1182-9). Hence, it would be good if authors can clarify why authors decided using stepwise method plus entered method in their analysis instead of entered method alone!

The following information has been added to clarify how missing data was handled and to motivate the use of stepwise and entered method:

A stepwise forward selection was used where variables with p≤0.05 were entered and those with p≥0.10 were removed. The Enter method was then used to verify a final model with more patients since several variables with missing data may have been excluded.

In stepwise forward selection method, according to the authors variables with p =<0.05 were entered and P=> 0.10 were removed. It is not clear how variables with p >0.05 and p <0.10 were treated in the subsequent analysis? In the stepwise forward selection procedure variables with p >0.05 and p <0.10 remain in the model as long as they are not p=> 0.10.

Is there any significant interaction terms between predictors were found in current study? Interactions between predictors were not analyzed as we had no hypotheses about them.

There is no information about missing data and how it was handled in current analysis. It would be if authors can elaborate more about missing data and how missing data was treated in current analysis. The following information has been added in Analyses:

Participants with missing data in a model were excluded from that particular model.

In Results section, authors mention that 44 declined and 18 could not be traced. I was wondering if authors can determine whether those who declined and could not be traced are different from those who remained in the study in terms of their baseline characteristics. Usually this information is very useful in order to ensure that the current results are not bias and can be generalize to the whole population cohort of the study. In addition to the presented comparisons of sex and age, comparison of stroke severity between the study population and the original study have been added. Further, comparisons between the study population and those from the original study who were deceased or non-responders have been added. Results, first paragraph:

Their mean age at stroke onset was 63 years, ranging from 24 to 85 years, 64 (58%) were men, and 91 (83%) had a mild stroke severity. The mean age of all 349 participants in the original study group at stroke onset was 72 years, ranging from 24 to 95 years, 188 (54%) were men, and ??? had a mild stroke severity. The mean age at stroke onset of the 239 participants from the original study group who were deceased or non-responders was 76 years, ranging from 37 to 95 years, 125 (52%) were men, and 123 (51%) had a mild stroke severity.

And in Discussion, last paragraph:

The 48% deceased participants in our sample is comparable to results from large register based studies in Sweden, thus our sample could be considered representative for the general stroke population six years after stroke (60).

19 Nov 2019

PONE-D-19-19035R1

Factors related to met needs for rehabilitation 6 years after stroke

PLOS ONE

Dear Dr. Ytterberg,

Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process.

One of the reviewers has concerns regarding sample size estimation and residual selection bias that may limit generalizability of the findings. I recommend that authors address these appropriately or alternatively, list these as some of the limitations of the work.

We would appreciate receiving your revised manuscript by Jan 03 2020 11:59PM. When you are ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file.

If you would like to make changes to your financial disclosure, please include your updated statement in your cover letter.

To enhance the reproducibility of your results, we recommend that if applicable you deposit your laboratory protocols in protocols.io, where a protocol can be assigned its own identifier (DOI) such that it can be cited independently in the future. For instructions see: http://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols

Please include the following items when submitting your revised manuscript:

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An unmarked version of your revised paper without tracked changes. This file should be uploaded as separate file and labeled 'Manuscript'.

Please note while forming your response, if your article is accepted, you may have the opportunity to make the peer review history publicly available. The record will include editor decision letters (with reviews) and your responses to reviewer comments. If eligible, we will contact you to opt in or out.

We look forward to receiving your revised manuscript.

Kind regards,

Janhavi Ajit Vaingankar

Academic Editor

PLOS ONE

[Note: HTML markup is below. Please do not edit.]

Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation.

Reviewer #1: All comments have been addressed

Reviewer #3: (No Response)

Reviewer #4: All comments have been addressed

**********

2. Is the manuscript technically sound, and do the data support the conclusions?

The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented.

Reviewer #1: Yes

Reviewer #3: Yes

Reviewer #4: Yes

**********

3. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #1: N/A

Reviewer #3: Yes

Reviewer #4: Yes

**********

4. Have the authors made all data underlying the findings in their manuscript fully available?

The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified.

Reviewer #1: Yes

Reviewer #3: No

Reviewer #4: No

**********

5. Is the manuscript presented in an intelligible fashion and written in standard English?

PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here.

Reviewer #1: Yes

Reviewer #3: Yes

Reviewer #4: Yes

**********

6. Review Comments to the Author

Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters)

Reviewer #1: Everything has been adressed adequately. The decision about table 1 should be with the publisher. Many thanks.

Reviewer #3: Overall, I was satisfied by the responses provided by the authors to my comments. However, I feel that some of the responses did not completely address my concerns.

- The authors state that a limitation of the study might be the sample size; this seems to contradict a prior assertion that their sample could be representative of the general stroke population in Sweden. I would be particularly cautious in referring to sample size as there is no indication in the manuscript how sample size was calculated.

- The authors have made significant efforts in providing demographic characteristics of the original sample; however it is still unclear if the non-respondents were different from the respondents. I encourage the authors to provide to perform a statistical analysis comparing at least the age and sex distribution of both groups (respondents and non-respondents)

- The authors state that the Barthel index is a measure of stroke severity. It is still my belief that the Barthel index measures disability and not stroke severity. Furthermore, measuring the Barthel index in the acute phase of stroke has significant pitfalls. The excellent review by Kasner ES (Lancet Neurol 2006; 5: 603–12) is a useful tool for understanding stroke scales. In that review, Kasner specifically point out that “In the setting of an acute stroke, the BI is not especially helpful as it is also highly susceptible to a “floor effect”. Most patients, even those with a minor stroke, are bedbound in the first few hours after stroke, either by their deficit or by medical directive, and therefore will initially receive low scores. Consequently, the BI cannot be used to measure initial stroke severity or, by extension, to stratify patients by severity in acute stroke trials”

Reviewer #4: Authors have addressed all my previous comments. I accept it as it is and I have no further comments.

**********

7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files.

If you choose “no”, your identity will remain anonymous but your review may still be made public.

Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy.

Reviewer #1: No

Reviewer #3: Yes: Alain Lekoubou

Reviewer #4: No

[NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files to be viewed.]

While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email us at figures@plos.org. Please note that Supporting Information files do not need this step.

29 Nov 2019

Reviewer #3

Overall, I was satisfied by the responses provided by the authors to my comments. However, I feel that some of the responses did not completely address my concerns.

- The authors state that a limitation of the study might be the sample size; this seems to contradict a prior assertion that their sample could be representative of the general stroke population in Sweden. I would be particularly cautious in referring to sample size as there is no indication in the manuscript how sample size was calculated.

Authors' response

We agree that it may not be adequate to refer to sample size since this was an observational study and no sample size calculation was performed. We have therefore deleted sample size as a limitation.

Reviewer #3

The authors have made significant efforts in providing demographic characteristics of the original sample; however it is still unclear if the non-respondents were different from the respondents. I encourage the authors to provide to perform a statistical analysis comparing at least the age and sex distribution of both groups (respondents and non-respondents)

Authors’ response

The following information has been added in the first paragraph of the results section:

There was no difference between study participants and non-responders in sex (p=0.203) but the non-responders were significantly older than the participants (p<0.001).

Reviewer #3

The authors state that the Barthel index is a measure of stroke severity. It is still my belief that the Barthel index measures disability and not stroke severity. Furthermore, measuring the Barthel index in the acute phase of stroke has significant pitfalls. The excellent review by Kasner ES (Lancet Neurol 2006; 5: 603–12) is a useful tool for understanding stroke scales. In that review, Kasner specifically point out that “In the setting of an acute stroke, the BI is not especially helpful as it is also highly susceptible to a “floor effect”. Most patients, even those with a minor stroke, are bedbound in the first few hours after stroke, either by their deficit or by medical directive, and therefore will initially receive low scores. Consequently, the BI cannot be used to measure initial stroke severity or, by extension, to stratify patients by severity in acute stroke trials”

Authors' response

Thank you for suggesting the review by Kasner ES which I have read with great interest. We agree that the Barthel Index is not useful within the first few hours after stroke when the patients are bedbound. However, the assessment with Barthel Index was in the present study performed within the first week. In addition, the BI was categorized in line with the recommendations in the article by Govan, Langhorne and Weir (Stroke 2009;40:3396-9): “BI, mRS, and SSS all have excellent agreement with each other when categorized”

Clarification has been made in the manuscript, last paragraph of the methods section:

All data were collected at the six-year follow-up except for data on stroke severity and age which were collected within the first week after stroke onset, and data on SOC which were collected at 12 months post stroke.

2 Jan 2020

Factors related to met needs for rehabilitation 6 years after stroke

PONE-D-19-19035R2

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Reviewer #3: Yes: Alain Lekoubou

3 Jan 2020

PONE-D-19-19035R2

Factors related to met needs for rehabilitation 6 years after stroke

Dear Dr. Ytterberg:

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