Patient Satisfaction after Antenatal Joint Fetal Medicine and Pediatric Surgery Counseling.

AIMS AND
OBJECTIVES: The aim of this study was to find out the level of satisfaction among couples receiving antenatal counseling provided jointly by fetal medicine specialists and pediatric surgeons.
MATERIALS AND METHODS: This was a questionnaire-based observational study. A total of 110 consecutive couples who were antenatally diagnosed with fetal structural anomaly and received counseling by fetal medicine specialist and pediatric surgeon together, were given a validated patient satisfaction questionnaire (PSQ-18) after delivery to assess their level of satisfaction regarding the antenatal care they received.
RESULTS: A total of 120 couple responded to the questionnaire, mean gestational age at delivery was 33.8 ± 7.14 weeks. In PSQ, 75.8% gave high scores for general satisfaction, maximum subjects provided high scores for interpersonal manner (IM) (77.5%) and communication (77.5%), and the least number gave high scores for time spent with the doctor (50.8%) and accessibility (42.5%). The technical quality (TQ) subscale was significantly high for the stillbirth/abortion group compared to live birth (P = 0.020). Significantly high scores for TQ (P = 0.037) and IM (P = 0.023) were obtained in the <20 weeks group.
CONCLUSION: The joint counseling provided good interaction opportunity to the couple but still fell short of their expectations regarding time spent with the doctor and their accessibility. Copyright:

INTRODUCTION

After the detection of the fetal structural anomaly on antenatal ultrasound, counseling is required to appraise the parents about the situation.[1] It generally involves the description of malformation, information about the possibility of surgical correction, the hazards of surgery, the chances of short and long-term survival, and the quality of life expected after correction.

Parents who choose to continue the pregnancy following a prenatal diagnosis may require support in adapting to their changed expectations and circumstances. The information provided after the prenatal diagnosis should be aimed at allowing them to prepare as much as possible before birth.[2] The counseling, therefore, requires empathy and concern on the part of the caregiver. Parents prefer a knowledgeable and empathetic health professional as their counselor and would like to be counseled by someone who would be involved in their child's future care.[3] Previous studies have concluded that a multidisciplinary approach was beneficial in reducing the couple's anxiety.[4] The geneticist could investigate the cause and prognostic factors associated with an anomaly, while the pediatric surgeon would be involved in explaining the surgical management for the condition.

The counseling by fetal medicine specialist and the pediatric surgeon was collectively done as a novel idea at our center. It provided an opportunity for the parents and the caregivers to communicate directly with each other to resolve their concerns. After the joint counseling, the pediatric surgeons were aware of the possible cause and the antenatal course of the congenital abnormality, and at the same time, the fetal medicine specialist had knowledge of the postnatal progression of the problem.

As there was no data on the level of couple satisfaction among couple receiving such counseling, the study was done to evaluate the level of satisfaction among the couples who received joint antenatal counseling and to find out the factors which influenced it.

MATERIALS AND METHODS

This was a prospective observational study performed from January 2017 to April 2019, at Lady Hardinge Medical College and SSK Hospital, New Delhi, after prior approval from the Institution's Ethical and Research Committee. The sample size was estimated by assuming the standard deviation score of 30 in the satisfaction questionnaire with a level of precision of 10 on either side of mean at a 99% level of statistical significance. The minimum desired sample size was 81, taking into account the nonresponse and lost to follow-up, the sample size of 120 was taken for the study.

All women referred to the joint counseling clinic after diagnosis of the fetal structural anomaly were counseled by pediatric surgeon and geneticist together, the ultrasound and investigations were done, and they remained in their close follow-up till delivery. The cases were managed according to the hospital protocol. After 24 h of the delivery or abortion, while still in the postnatal ward, the couple were asked if they were willing to respond to the questionnaire, those who consented were provided the patient satisfaction questionnaire (PSQ-18) by the resident doctor [Table 1].

Table 1

The patient satisfaction questionnaire-18 patient satisfaction questionnaire with its subscales with minor modifications to adapt to the study

General satisfaction

3) The counseling and care which I received was just about perfect

17) I am dissatisfied with somethings about the counseling and care I received

Technical quality

2) I think the hospital had everything needed to provide complete care for my condition

4) Sometimes I wondered if their diagnosis was correct

6) When I came for counseling, they were careful to check everything while treating and examining me

14) I have some doubt about the ability of the doctors who treated me

Interpersonal manner

10) Doctors acted too businesslike and impersonal toward me

11) Doctors treated me in a very caring and courteous manner

Communication

1) Doctors were good about explaining the condition of the baby, its outcome after delivery and the possible reasons for its occurrence

13) Doctors sometimes ignored what I wanted to tell them

Financial aspects

5) I received the counseling and care I needed without being set back financially

7) I had to pay for more of my treatment than I could afford

Time spent with doctor

12) Those who provided counseling and care sometime hurried too much when they treated me

15) Doctors usually spent plenty of time with me

Accessibility and convenience

8) I had easy access to the medical specialists I needed

9) I had to travel a long distance to come to the hospital

16) I found it hard to get an appointment for counseling and care right away

18) I was able to get counseling and care whenever I needed it

The PSQ-18 was used to measure the level of satisfaction. In the questionnaire, the phrase “medical care” was replaced by “antenatal counseling and care,” the questionnaire was translated in the local “Hindi” language, the translated version underwent pilot testing before its use in the study. The PSQ-18 is an 18-item survey that taps global satisfaction with medical care as well as satisfaction with six aspects of care. The internal consistency and reliability of this questionnaire has been established and is validated for use in a variety of settings 5. The PSQ-18 yields separate scores for each of seven different subscales: general satisfaction (GS) (Items 3 and 17); technical quality (TQ) (Items 2, 4, 6, and 14); interpersonal manner (IM) (Items 10 and 11); communication©(Items 1 and 13); financial aspects (FAs) (Items 5 and 7); time spent with doctor (TSD) (Items 12 and 15); accessibility and convenience (A and C) (Items 8, 9, 16, and 18). Some PSQ-18 items were worded so that agreement reflected satisfaction with medical care, whereas other items were worded so that agreement reflected dissatisfaction with medical care. All items were scored so that high scores reflected satisfaction with medical care. After scoring, items within the same subscale were averaged together to create the seven subscale scores. PSQ-18 subscales formed by the combination of some specific group of the questionnaire, the score of which ranged from 1 to 5, 1 was for strongly agree, 2 – agree, 3 – uncertain 4 – disagree, and 5 – strongly disagree. The questionnaire was scored in such a way that the maximum score showed good satisfaction. For GS, IM, C, FAs, and TSD, the individual group score of 2–4 was considered low, 5–7 was considered medium, and 8–10 was considered high. For TQ and A and C score 4–9 was considered low, score 10–15 was considered medium, and score 16–20 was considered high.

For the statistical analysis, the data were entered into MS Excel and were analyzed using SPSS version 17 (IBM corporation, New York, USA). Descriptive statistics in the form of mean and standard deviations or proportions were used to characterize the study sample. The difference between the means of the two groups was compared using the t-test (for normal distribution). ANOVA test was used to observe the difference between the means of more than two groups. A value of P < 0.05 was considered statistically significant.

RESULTS

A total of 120 couple responded to the questionnaire. Their demographic characteristics are shown in Table 2. The maternal age ranged from 19 to 38 years (mean 25.27 ± 3.45 years), 50.8% of women were primiparous. There was no adverse obstetric history in 102/120 (85.0%), 96/120 (80%) cases presented after 20 weeks of gestation.

Table 2

Epidemiological profile including age, parity, obstetric history, gestational age at presentation, and delivery in the study of the respondents

	Number of cases (n=120), n (%)
Age (years)
19-22	31 (25.8)
23-26	52 (43.3)
27-30	25 (20.8)
31-34	7 (5.8)
35-38	5 (4.2)
Parity
0	61 (50.8)
1	38 (31.7)
2	18 (15.0)
≥3	3 (2.5)
Obstetric history
No adverse obstetric history	102 (85.0)
Intrauterine death	7 (5.8)
Major structural defect	5 (4.2)
≥1 abortion	6 (5.0)
Gestational age at presentation in weeks
≤20	24 (20.0)
21-25	27 (22.5)
26-30	34 (28.3)
31-35	25 (20.8)
36-40	10 (8.3)
Gestational age in week at delivery
≤20	18 (15.0)
21-25	4 (3.3)
26-30	8 (6.7)
31-35	24 (20.0)
36-41	66 (55.0)

Twenty-two out of 24 cases who were booked before 20 weeks underwent pregnancy termination, 25 (20.8%) cases were stillborn, rest 73 (60.8%) were born live. The mean gestational age at delivery was 33.8 ± 7.14 weeks. The craniovertebral defects were seen in 47/120 (39.2%) followed by urogenital anomalies in 36/120 (30.0%) cases. Vaginal delivery occurred in 96/120 (80.0%) cases. There were major or multiple anomalies in 74 (61.7%) cases and minor or mild anomalies in rest [Table 3].

Table 3

The delivery details of the subjects including the route, status at birth, sex and type of birth defect in the baby

Delivery	Number of subjects (n=120), n (%)
Mode of delivery
Vaginal delivery	96 (80.0)
LSCS	22 (18.3)
Status at birth
Live	73 (60.8)
Stillborn	25 (20.8)
Abortion	22 (18.3)
Sex
Girl	42 (35.0)
Boy	56 (46.7)
Disorders of sex differentiation	2 (1.7)
Type of defect
Cranio-vertebral	47 (39.2)
Urogenital	36 (30.0)
Gastrointestinal	17 (14.2)
Cardiothoracic	8 (6.7)
Skeletal defect	6 (5.0)
Hydrops	5 (4.2)
Cleft lip/cleft palate	1 (0.8)

LSCS: Lower segment cesarean section

For the analysis of PSQ subscales, the scores were divided into low, medium, and high. The maximum number of subjects gave high scores for IM and communication (93/120, 77.5%) the mean score in this subscale was 8.3 (range 4–10). The least number of them provided high scores for TSD and A and C (61/120, 50.8% and 51/120, 42.5%, respectively), the mean score was 7.2 (range 3–10). Overall 91/120 (75.8%) gave high scores for GS [Table 4].

Table 4

The number of subjects who gave low, medium, and high scores in each subscale of patient satisfaction questionnaire-18 satisfaction score

Satisfaction score PSQ-18 subscales	Range of scores in subjects (n=120)
	Low score (2-4), n (%)	Medium score (5-7), n (%)	High score (8-10), n (%)
General satisfaction	0	29 (24.2)	91 (75.8)
Interpersonal manner	2 (1.7)	25 (20.8)	93 (77.5)
Communication	3 (2.5)	24 (20.0)	93 (77.5)
Financial aspect	6 (5.0)	40 (33.3)	74 (61.7)
Time spent with doctors	10 (8.3)	49 (40.8)	61 (50.8)
Satisfaction score PSQ-18 subscales	Range of scores in subjects (n=120)
	Low score (4-9), n (%)	Medium score (10-15), n (%)	High score (16-20), n (%)
Technical quality	0	41 (34.2)	79 (65.8)
Accessibility and convenience	5 (4.2)	64 (53.3)	51 (42.5)

PSQ-18: Patient satisfaction questionnaire-18

Except for the TQ subscale, which was significantly high for stillbirth/abortion group compared to livebirth (P = 0.020), there was no significant difference in the satisfaction between other subscales. Those who came before 20 weeks gave significantly high scores for TQ (P = 0.037) and IM (P = 0.023) compared to those who presented after 20 weeks. There was no significant difference in satisfaction level with respect to the mode of delivery, the outcome of the pregnancy and the sex of the fetus (P > 0.050) [Table 5].

Table 5

The comparison of patient satisfaction questionnaire-18 score with its subscales in live versus stillbirth and <20 weeks versus ≥20 weeks gestation along with P

PSQ-18subscale	Live birth (n=73)	Still birth/abortion (n=47)	P	Gestation <20 weeks (n=24)	Gestation ≥20 weeks (n=96)	P
General satisfaction	8.2±1.2	8.4±1.3	0.332	8.7±1.2	8.2±1.2	0.098
Technical quality	15.7±2.2	16.7±1.8	0.020	17.0±2.0	15.9±2.1	0.037
Interpersonal manner	8.2±1.3	8.5±1.5	0.202	8.9±1.1	8.1±1.4	0.023
Communication	8.3±1.3	8.4±1.5	0.932	8.6±1.5	8.3±1.2	0.339
Financial aspects	7.4±1.7	7.8±1.3	0.154	7.9±1.4	7.5±1.5	0.330
Time spent with doctors	7.1±1.8	7.3±1.6	0.558	7.5±1.6	7.1±1.8	0.365
Accessibility and convenience	14.3±2.9	14.8±3.7	0.497	15.1±3.3	14.3±3.2	0.302

PSQ-18: Patient satisfaction questionnaire-18

No significant difference in the satisfaction subscale among different anomalies was found except for the time spent with the doctors, which differed significantly with the type of anomaly. Cases with a skeletal defect or cleft lip/palate (CLP) provided low scores for the time spent with the doctor (mean score ≤3) compared to cases with hydrops and cardiothoracic anomaly (mean score 4.6) [Table 6].

Table 6

The mean score given in each subscale of patient satisfaction questionnaire-18, given by subjects with different fetal structural anomalies

Type of anomaly	Mean score of different subscale of PSQ-18
	General satisfaction	Technical quality	Interpersonal manner	Communication	Financial aspect	Time spent with doctor	Accessibility and convenience
Cranio-vertebral	4.2±0.09	4.1±0.08	4.1±0.14	4.2±0.10	3.7±0.12	3.4±0.14	3.5±0.13
Urogenital	4.0±0.12	3.9±0.11	4.0±0.10	4.0±0.13	3.7±0.12	3.5±0.17	3.5±0.15
Gastrointestinal	3.8±0.15	3.8±0.13	4.1±0.16	4.2±0.13	3.7±0.26	3.6±0.2	3.6±0.15
Cardiothoracic	4.6±0.16	4.5±0.14	4.8±0.16	4.6±0.16	4.0±0.88	4.6±0.00	3.1±0.23
Hydrops	4.7±0.3	4.4±0.25	4.4±0.40	4.6±0.29	4.0±0.44	4.6±0.29	4.3±0.26
Multiple	4.1±0.31	4.0±0.15	4.3±0.23	4.0±0.35	4.0±0.35	4.1±0.12	3.9±0.32
Cleft lip/palate	4.5±0.0	4.0±0.0	5.0±0.00	4.0±0.00	4.5±0.0	3.0±0.0	3.2±0.00
Skeletal defect	4.0±0.12	3.8±0.2	4.0±0.36	3.9±0.32	3.6±0.21	2.9±0.32	3.3±0.28
P	0.150	0.252	0.622	0.453	0.973	0.009	0.332

PSQ-18: Patient satisfaction questionnaire-18

DISCUSSION

The study is the first to objectively assess the level of satisfaction in couple attending joint counseling by fetal medicine and pediatric surgeon in view of fetal structural malformation. Besides overall satisfaction, the study also tried to delve on the subdomains such as IM and communication, time spent with the doctor, the accessibility of the provider, convenience in the utilization of care and also the FA related to it. In order to understand the impact of the outcome and the type of anomaly on the level of satisfaction, different subgroups were compared. The assessment was made with the help of the validated PSQ-18 questionnaire; each domain was tested through different related questions.[5]

For a couple diagnosed to have a structural anomaly in the fetus, just conveying the news is not enough. They may be anxious to know about various other aspects related to its treatment and delivery, but at the same time, may wonder why did it happened and would be anxious that it might happen again. If all stakeholders, namely the parents, pediatric surgeons, and the fetal medicine specialist communicate with each other jointly, the level of satisfaction of the parents is bound to be high. The study was undertaken to objectively assess this aspect of antenatal care. Marokakis et al. did a systematic review of prenatal counseling after diagnosis of congenital anomalies, and the review showed that the parents expressed a preference for counseling on all aspects of their baby's anomaly as soon as possible after prenatal diagnosis. They preferred a written, visual and web-based information and support group conta.[3]

In the present study, more than two-thirds of the subjects gave high scores for GS, the maximum number of subjects gave high scores for IM and communication (77.5%), showing that the parents were very satisfied with the approach of joint counseling. The woman with antenatally diagnosed fetal malformation needs support and empathy from the provider who is delivering the news, the IM and communication refer to this aspect of the caregiving environment.[6]

The least number gave high scores for the time spent with the doctor (51%) and accessibility (42%). This suggests that there was room for improvement in this aspect of care. Even though the couple came to the government hospital and were not charged for the services, but they had to leave their work and wages while they visited the doctor; travel costs also added to their financial burden; therefore, only 64% of the women gave high scores for the FA.

Although the overall satisfaction score did not differ significantly with the type and severity of the structural defect, among the subscales, the cases with CLP and skeletal defect drew lower scores for the time spent with the doctor. The reason for this was perhaps that the provider took it as a minor defect, but the perception of the mother was not the same. Cope and co-investigators conducted an randomized controlled trial (RCT) to explore whether the format of information provided during counseling influenced parental anxiety scores.[7]

A major influence throughout the process of breaking bad news is the impact of responsibility and guilt and the subsequent need for tailored support, differing from that provided following other bereavements, such as stillbirth.[8] In the study by Lotto et al., they found that many parents were unprepared for the physical process of delivery following abortion for congenital anomaly and despite access to written and verbal information.[34] It was evident from our study that the satisfaction scores were significantly high for TQ among those who had stillbirth or abortion compared to those who had a live-birth.

The couple seemed to be less satisfied with the advent of live birth as they were anxious about the need for further treatment and hospital stay. Similarly, those who presented before 20 weeks of gestation gave a significantly higher score for TQ and IM subscales compared to those who came after 20-week gestation. The prime reason for this was that the women could undergo termination of pregnancy if they came before 20 weeks but if they came later, they had to continue with the pregnancy even against their wish as Indian law did not allow termination after 20 weeks of pregnancy. This finding supports the conclusion of Phadke et al. that both laypersons and the medical community in India favor a revision of the legislation to allow late termination particularly for fetal conditions with poor outcomes.[9] In a similar study, Aite et al. concluded that the early antenatal diagnosis should be encouraged as it increases the chance of repeated consultations for the prospective parents leading to lowered anxiety at birth.[10]

The major limitation of the study was that there was no control group to compare the results, but no counseling would be unethical; hence, the observational study was done. The other drawback was that we did not evaluate parental anxiety after receiving the bad news. The strength of the study was the use of a validated questionnaire to assess the satisfaction of the women, from joint counseling by pediatric surgeons and geneticist and this aspect of care has been scarcely studied.

CONCLUSION

The study reiterates that joint counseling of couples by a pediatric surgeon and geneticist provides high overall satisfaction to the couple having a fetus with antenatally diagnosed birth defect. The time spent with the doctor and their accessibility were the areas to improve upon. The early diagnosis of the anomaly provided greater satisfaction among couples.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.