| Literature DB >> 34392413 |
Shannen R van der Kruk1,2,3, Phyllis Butow4, Ilse Mesters1, Terry Boyle3, Ian Olver5, Kate White6, Sabe Sabesan7, Rob Zielinski8,9, Bryan A Chan10, Kristiaan Spronk2,11, Peter Grimison12, Craig Underhill13, Laura Kirsten14, Kate M Gunn15,16.
Abstract
PURPOSE: To summarise what is currently known about the psychosocial morbidity, experiences, and needs of people with cancer and their informal caregivers, who live in rural or regional areas of developed countries.Entities:
Keywords: Cancer; Healthcare needs; Informal caregivers; Oncology; Psychosocial; Rural
Mesh:
Year: 2021 PMID: 34392413 PMCID: PMC8364415 DOI: 10.1007/s00520-021-06440-1
Source DB: PubMed Journal: Support Care Cancer ISSN: 0941-4355 Impact factor: 3.603
Search strategy*
| Medical Subject Heading (MeSH) terms | Text terms included in titles and/or abstract | ||
|---|---|---|---|
| 1 | Neoplasms | cancer OR neoplasm OR carcinoma OR oncology | |
| 2 | Rural population | regional OR remote OR travel | |
| 3 | ‘Quality of life’ | well-being OR ‘quality of life’ OR QOL OR psycho* OR social OR emoti* OR morbidity OR adjust* OR depress* OR anx* OR distress OR ‘unmet needs’ OR need* | |
| 4 | Adult | adult OR adults OR men OR women OR man OR woman OR elderly OR ‘the aged’ OR ‘middle aged’ OR senior* OR geriatric* | |
| 5 | Oceanic ancestry group | aborigi* OR indigenous* | |
*Combined as (#1 OR #6) AND (#2 OR #7) AND (#3 OR #8) AND (#4 OR #9) NOT (#5 OR #10)
Figure 1PRISMA study selection flowchart
Qualitative studies including both rural and urban survivors
| Author, year (country) | Population | Study design | Response rate | Sample size | Setting | Measure | Type of cancer | Results | Study quality |
|---|---|---|---|---|---|---|---|---|---|
| Studies on unmet needs of cancer survivors | |||||||||
| Jones, 2011 (United States) [ | Cancer survivors | Qualitative descriptive study (hermeneutic phenomenological approach using focus groups; semi-structured interview) | N/A | 12 urban and 11 urban | African American prostate cancer survivors were recruited from community-based centres (churches, barbershops, diners, and primary care clinics) in central Virginia and Maryland | N/A | Prostate cancer | Two common themes emerged: (1) family and physician support are important; and (2) insurance is a necessity for appropriate healthcare; one major difference between rural and urban African American prostate cancer survivors emerged: rural participants talked more about using spirituality throughout their diagnosis and treatment than those who lived in urban areas | Very good |
| Miedema, 2013 (Canada) [ | Cancer survivors | Qualitative study (open-ended interviews using the Constructivist Grounded Theory approach) | N/A | 15 from New Brunswick and 15 from the Greater Toronto Area | Two distinct areas of Canada: New Brunswick, a rural Eastern Canadian province, and Toronto, Canada’s largest metropolitan centre | N/A | Various (1 to 5 years post-diagnosis) | Three themes emerged from the analysis of the data: (1) delayed diagnosis (dismissed complaints, wrong diagnosis, unusual age for diagnosis); (2) cost related to cancer treatment (medication costs, part-time work, lack of sick leave and limited health insurance coverage, and reliance upon parental assistance); and (3) community support (benefit events, meals and support from friends, cancer organisation support); additional theme was satisfaction with care (lack of information and support, regional issues, top class cancer facility, and intense follow-up screening) | Very good |
| Wenzel, 2012 (United States) [ | Cancer survivors | Qualitative study (semi-structured focus groups) | N/A | 28 urban and 20 rural (snowball sampling) | African Americans residing in a rural area in Virginia or an urban area in Maryland recruited from community-based centres | N/A | Various | Four main issues emerged from the analysis of the data: (1) the need for more health-related and cancer-specific education; (2) the importance of faith and spirituality; (3) the availability of support; and (4) participants’ difficulty identifying and articulating financial needs | Good |
| Studies on needs and psychological morbidity | |||||||||
| Galica, 2020 (Canada) [ | Cancer survivors | Qualitative descriptive study (semi-structured focus groups or telephone interviews) | N/A | 6 small urban and 9 rural (convenience sample) | Participants completed treatment at the Cancer Centre of South-eastern Ontario in Kingston, Ontario, Canada | N/A | Ovarian cancer (average time since diagnosis was 2.7 years) | Five themes for coping were expressed by all women: (1) healthcare provider support; (2) knowing, trusting, and prioritising self; (3) finding what works; (4) uniqueness and belonging; and (5) redirecting thoughts and actions. One additional theme was expressed by most women: (6) preparing for the future | Very good |
| Studies on financial issues and travel issues | |||||||||
| McGrath, 2015 (Australia) [ | Cancer patients | Qualitative descriptive study (open-ended, in-depth interviews) | N/A | 5 metro, 16 regional, 14 rural, 9 remote, 1 interstate (purposive sample) | The study was funded by the Leukaemia Foundation of Queensland (LFQ) Australia and participants were chosen from the LFQ patient contact database for 2012; geographical location defined by distance to primary specialist centres | N/A | Haematological cancer | Two important strategies: (1) visits by metropolitan haematologist to regional areas (benefits included not having to experience the stress of separation from family, reduction in the need for lengthy travel, regional hospital is familiar, reduction in the financial cost of treatment, local treatment with regard to taking time off); and (2) opportunities for haematology patients to undergo part or all of their treatment at regional hospitals (allows patients to stay within the comfort of their own home, physically less demanding, very convenient and time saving for those who live locally, more convenient, bonds of trust and friendship with regional health professionals, regional hospital can be accessed by car); lessens the emotional impact of diagnosis and treatment, and patients are better off financially being treated regionally | Good |
| McGrath, 2015 (Australia) [ | Cancer patients | Qualitative descriptive study (open-ended, in-depth interviews) | N/A | 5 metro, 16 regional, 14 rural, 9 remote, 1 interstate (purposive sample) | The study was funded by the Leukaemia Foundation of Queensland (LFQ) Australia and participants were chosen from the LFQ patient contact database for 2012; geographical location defined by distance to primary specialist centres | N/A | Haematological cancer | At the point of diagnosis and along the continuum of treatment, the experience of relocation was associated with psychosocial stress; major issues were the sense of disorientation and being overwhelmed by the speed and complexity of the city; needs resulting from family separation are not always addressed and was described as the ‘biggest’ issue creating distress; the distress was not only associated with lack of support and loneliness for patients but was also related to concerns about the impact of separation on family members remaining at home; strong theme for those who had to relocate for specialist treatment was the sense of being stuck in the city; stoicism is associated with rural living, which could translate into individuals not talking about their longing to go home; many would prefer the option of accessing treatment locally | Good |
| McGrath, 2015 (Australia) [ | Cancer survivors | Qualitative descriptive study (open-ended, in-depth interviews) | N/A | 5 metro, 16 regional, 14 rural, 9 remote, 1 interstate (purposive sample) | The study was funded by the Leukaemia Foundation of Queensland (LFQ) Australia and participants were chosen from the LFQ patient contact database for 2012; geographical location defined based on the government scheme for assisting patients with travel and accommodation (The Patient Transit Subsidy Scheme = PTSS) | N/A | Haematological cancer | Eight themes emerged from the analysis of the data: (1) the challenge of accessing treatment from a distance; (2) strategies for overcoming the distance barrier, including what works now and ideas for the future; (3) the importance of work issues for both the patient and their family; (4) the additional costs of relocation and treatment; (5) the factors contributing to financial distress and hardship; (6) the financial buffers; (7) the possibility of a spiral to poverty; and (8) the contribution of Leukaemia Foundation of Queensland’s supportive care service delivery to ameliorating the impact of relocation | Good |
Qualitative studies including only rural survivors
| Author, year (country) | Population | Study design | Response rate | Sample size | Setting | Measure | Type of cancer | Results | Study quality |
|---|---|---|---|---|---|---|---|---|---|
| Studies on the use of formal and informal mental health resources | |||||||||
| Gunn, 2013 (Australia) [ | Cancer survivors | Qualitative study (semi-structured, face-to-face, hour-long interviews) | N/A | 17 | Participants were recruited through Cancer Council South Australia’s supported accommodation facilities, the rural media and personal contacts; rurality was defined by the Accessibility/Remoteness Index of Australia (ARIA) | N/A | Various | The themes identified could be split into two broad categories: (A) Issues in the provision of psychosocial care: (1) psychosocial support is highly valued by those who have accessed it; (2) having access to both lay and professional psychosocial support is vitally important; (3) accessing psychosocial services is made difficult by several barriers such as lack of information about services, initial beliefs they are unnecessary, feeling overwhelmed, and concerns about stigma and dual relationships; (4) medical staff located in metropolitan treatment centres are not sufficiently aware of the unique needs of rural patients; (5) patients require better access to psychosocial services post-treatment; (B) How the provision of psychosocial care could be improved: (1) providing more rural-specific information on psychosocial care; (2) improving communication between healthcare providers and referral to psychosocial services; (3) making psychosocial services a standard part of care | Very good |
| Pascal, 2014 (Australia) [ | Cancer survivors | Qualitative descriptive study (in-depth interviews) | N/A | 19 (purposive sampling) | The sample was drawn from the geographic setting within the Loddon-Mallee region of Central Victoria, Australia; rurality was defined by the Australian Institute of Health and Welfare definition | N/A | Various (2 years post-treatment) | Psychosocial care provision unmet needs included feeling let down by formal service provision, sense of isolation, lack of access to psychosocial care, lack of information and referrals, lack of follow-up care, inaccessibility of services due to distance cost or wait times, and lack of appropriate care based on age, stage, or type of cancer; unmet needs based on professional psychosocial support were based on luck of getting support, or having family members/friends, who had professional or medical knowledge; there is a major gap in psychosocial care provision | Good |
| Studies on unmet needs of cancer survivors and patients in palliative care | |||||||||
| Adams, 2017 (United States) [ | Cancer survivors | Qualitative study (focus groups and in-depth interviews, using semi-structured) | N/A | 15 | Participants who lived in one of three rural Black Belt counties in Alabama recruited through the Community Health Advisors as Research Partner (CHARP) network; rurality not defined | N/A | Women with breast cancer (average 5 years in survivorship) | Four overarching themes emerged during the analysis of the data: (1) cancer is a secret; (2) perish with lack of knowledge; (3) start with a good prayer life; and (4) limited survivorship support and education; these four themes can further be divided into thirteen subthemes, as follows: (1) fatalism at diagnosis, delay in treatment, fear of disclosure; (2) what is lymphedema, what are the side effects of hormonal therapy, sexuality and body image, fatigue, fear of weight loss, depression; (3) religion and spirituality; and (4) family/friend support, education and support, cancer surveillance, awareness of breast cancer advocacy | Good |
| Allen, 2014 (United States) [ | Cancer survivors | Qualitative study (face-to-face or telephone interviews, semi-structured open-ended interviews grounded in a social constructionist theoretical framework) | N/A | 20 | Rural Appalachia recruited from cancer centres: Southwest and West Virginia | N/A | Gynaecological cancer | The study provides three new perspectives: (A) participants followed four different routes in learning they had cancer: (1) receiving a diagnosis immediately upon suspecting symptoms; (2) enduring a series of tests and waiting up to a year for confirmation; (3) living with the suspicion that something was wrong but delayed medical confirmation until after meeting family responsibilities; (4) having their cancer discovered during routine gynaecological exam; (B) There was great variation among the women in their beliefs about cancer and four different patterns of cancer survivorship were revealed: (1) positive attitude; (2) cautious; (3) distanced; (4) resigned; and (C) Although not every women resonated with being a cancer survivor, every women did perceive herself to be strong and felt supported by strong family ties and strong connections to higher power | Very good |
| Coyne, 2019 (Australia) [ | Cancer survivors | Qualitative study (in-depth telephone interviews) | 200 invited; 16 completed consent; 14 completed interviews | 8 survivors and 6 family members | The participants for this study resided in rural Queensland and had stayed in Cancer Council Queensland [CCQ] accommodation during treatment; rural is defined as living up to and over 180 km away from a major city | N/A | Various | Three themes emerged from the analysis of the data: (1) confronting diagnosis, i.e., the initial shock, sense of disbelief, working through the shock, and the importance of support at this time, was imperative; (2) challenges, i.e., getting through the treatment, travelling to and from treatment; and (3) negotiating support, i.e., person with cancer felt concerned about being a burden to their family and information was a challenge as it was not always at their level of understanding (included community, spiritual, and instrumental support) | Very good |
| Devik, 2013 (Norway) [ | Cancer patients in palliative care | Qualitative study (interviews; combined phenomenological philosophy with hermeneutic interpretation) | N/A | 5 | Contact was mediated through an oncologic policlinic in a local hospital in Norway; the participants resided in communities (both mountain and coastal) with low population density; ranged from 920 to 7775 | N/A | Various (incurable cancer, receiving life-prolonging chemotherapy) | Four themes emerged from the analysis of the data: (1) enduring by keeping hope alive (subthemes: having confidence in the expertise at the policlinic, coping with conflicting feelings, dreaming and making plans); (2) becoming aware that you are your own (subtheme: navigating alone); (3) living up to expectations of being a good patient (subtheme: having limited control, becoming a burden); and (4) being at risk of losing identity and value (subtheme: being in decline, losing dignity, losing continuity) | Very good |
| Duggleby, 2011 (Canada) [ | Cancer patients in palliative care | Qualitative study (open-ended interviews and focus groups defined in grounded theory) | N/A | 6 patients, 10 family caregivers, and 12 rural healthcare professionals (purposive sampling) | The palliative care coordinators from the 3 rural health regions in western Canada contacted participants, self-reported to live in a rural area | N/A | Various | Four themes emerged from the analysis of the data: (1) community connectedness/isolation (participants described feeling connected to their community as part of the social context but also isolated, rural healthcare providers connected through living and working with people they knew both personally and professionally); (2) lack of accessibility to care (lack of access to palliative care services and lack of continuity of care); (3) communication and information issues (poor communication with healthcare providers resulted in palliative patients and their family members perceiving that they were lacking important information regarding their care); and (4) independence/dependence (shared sense that palliative patients, together with their informal and formal caregivers, felt the need for retaining the patient’s sense of independence as they became more dependent on others) | Very good |
| Garrard, 2017 (Australia) [ | Cancer patients and their family | Qualitative study (semi-structured interviews based upon the Resilience Model of Family Adjustment and Adaption) | N/A | 10 families, 34 patients total | Participants were recruited via a media release and by rurally based doctors; postcode as ‘outer regional’ according to the Accessibility/Remoteness Index of Australia (ARIA) | N/A | Not reported | Three key challenges were identified: (1) frequent travel; (2) increased work/financial demands; and (3) family separation; protective internal factors were an adaptive communication approach, strength of family relationships and its value, and family’s ability to problem-solve to promote normality; protective external factors were availability and engagement of community support, and the ability to access professional support services | Very good |
| Grimison. 2013 (Australia) [ | Cancer patients | Qualitative (focus groups and structured interviews via telephone or face-to-face) | N/A | 36 patients, 14 carers, and 32 health professionals | New South Wales, Australia at four rural and regional hospitals and three metropolitan locations; rural area defined by Accessibility/remoteness index of Australia (ARIA) | N/A | Various (diagnosed in the last 2 years) | Six themes emerged from the analysis of the data: (1) access to healthcare professionals; (2) access to services for investigation and treatment; (3) travel and accommodation; (4) quality of treatment; (5) information and support needs; and (6) experience of healthcare professionals | Good |
| Loughery, 2019 (Canada) [ | Cancer survivors | Qualitative interpretive study (open-ended, semi-structured interviews, face-to-face) | N/A | 20 (purposive sampling) | Rural or north areas of Manitoba, Canada | N/A | Women with breast cancer | Findings according to the domains of the supportive care framework: (1) physical: travelling and access to experienced and qualified health professionals resulted in additional burdens on family and friends; however, the positive roles of the rural cancer program helped many transition through the physical demands that were encountered; (2) information: number of factors impacted the ability to process the information such as escalating fears, long travel days, and lack of a support person available to attend the appointment; (3) social: living alone was positive and negative, nurses are important in rural setting, strong sense of community but lack of anonymity and invasion of privacy; (4) practical: burden of extensive travel, relocation, employment challenges, and financial losses; (5) emotional: shock, disbelief, denial, fear, uncertainty, anger, guilt, feelings of anxiety, and travel burden; (6) psychological: loss of control over the illness experience, altered body image related to hair loss, or decreased self-esteem; (7) spiritual: as difficult as the journey was, it was often described as a time for discovery | Good |
| Sawin, 2010 (United States) [ | Cancer survivors | Qualitative study (semi-structured interview using a hermeneutic phenomenological strategy) | N/A | 9 (convenience sample) | Rural women from community settings in western Virginia and West Virginial; Rurality was determined by participants’ responses to the Rural Survey and confirmed by matching participants’ zip codes with statistics on rurality from the Virginia Department of Health, the US Census Bureau, and the United States Department of Agriculture (USDA) | N/A | Women with breast cancer (average 9.8 years post-diagnosis) | Several themes emerged related to the experience of breast cancer with a non-supportive intimate partner in a rural setting: (1) driving (driving was exhausting and stressful); (2) gossip (women did not mention loss of privacy in terms of the breast cancer, but rather in the context of their difficult intimate partner relationships, which had both positive and negative manifestations); (3) rural location as therapeutic (although the participants did not have the support of their intimate partner, they described the rural location and physical space as an important part of their cancer recovery); and (4) community support (community support was an important aspect of support for these rural women) | Good |
| Wagland, 2015 (Australia) [ | Cancer survivors | Qualitative (semi-structured interviews through interpretative phenomenological analysis) | N/A | 5 | Participants were recruited through the Leukaemia Foundation National Myeloma Coordinator and the ‘Myeloma’ newsletter (rural Australia) | N/A | Myeloma (average 5.2 years post-diagnosis) | Three themes emerged from the analysis of the data: (1) isolation due to living with a rare cancer; (2) isolation within the myeloma population; and (3) isolation due to the disease effects and treatment; isolation depicted the sense of being alone or separated, both physically and psychologically, from potential sources of support | Good |
| Studies on needs and quality of life | |||||||||
| Gunn, 2021 (Australia) [ | Cancer survivors and their carers | Qualitative (semi-structured, face-to-face interviews through thematic analysis) | N/A | 22 | Participants expressed interest in participating in response to media articles, posters, and notices; rural area defined by Accessibility/remoteness index of Australia (ARIA) | N/A | Various (1–5 years post-treatment) | Study consisted of two parts; part A investigated the impact of post-treatment challenges on quality of life and found four overarching themes: (1) quality of life is not restored after treatment completion, e.g., fear of recurrence and feeling depressed or fatigued; (2) lack of confidence in rural health services’ ability to help address post-treatment quality of life; (3) challenges with returning to metropolitan centres, such as time away and financial costs; and (4) most support provided by family, friend, nurses, and support groups. Part B investigated how quality of life-related needs could be better addressed and found six overarching themes: (1) engage with telephone or face-to-face services; (2) serviced need to reach out; (3) barriers to accessing support via internet-based programs still exist; (4) continuity of care highly valued; (5) nurses are appropriate to deliver post-treatment, quality of life-focussed support; and (6) telehealth is popular alternative to face-to-face appointments | Very good |
Quantitative studies with rural and urban comparison groups
| Author, year (country) | Population | Study design | Response rate | Sample size | Setting | Measure | Type of cancer | Results | Study quality |
|---|---|---|---|---|---|---|---|---|---|
| Studies on the use of formal and informal mental health resources | |||||||||
| Andykowski, 2010 (United States) [ | Cancer survivors | Cross-sectional | 34% | 51 rural and 62 nonrural | Cancer survivors were recruited from the state-wide, population-based Kentucky SEER Cancer Registry (KCR); the rural-nonrural distinction was defined by objective, geographic, and population-based criteria: 2003 United States Department of Agriculture (USDA) Rural-Urban Continuum (RUC) Codes | The Mental Health Resource Questionnaire (MHRQ) | Female breast cancer, colorectal or haematological cancer; 1 to 5 years post-diagnosis | Rural survivors were less likely to report a psychologist ( | Very good |
| Beraldi, 2015 (Germany) [ | Cancer patients | Cross-sectional | 89% | 251 rural and 283 urban | Data was obtained from the Munich Cancer Registry; rurality was categorised in a similar way as the Rural-Urban Continuum (RUC) Code, considering the regional conditions of Southern Germany | Distress was evaluated using the Distress Thermometer (DT) and the Stress in Cancer Patients (QSC-R10); depression and anxiety were evaluated by the Patient Health Questionnaire (PHQ-4) | Colorectal cancer; 3 months after surgery | Urban patients talked less with their doctor about their emotional state (65%, | Very good |
| Corboy, 2014 (Australia) [ | Cancer survivors | Cross-sectional | 31% | 286 major cities, 104 inner regional, 46 outer regional, 8 remote, 3 very remote | Registered with Australia Medicare; geographic remoteness was measured as a continuous variable, using the Accessibility/Remoteness Index of Australia (ARIA+) | The Liverpool Stoicism Scale (LSS); the Need for Control and Self-reliance subscale of the Barriers to Help Seeking Scale | Australian men who had undergone a radical prostatectomy as treatment for prostate cancer; 9.11 months post-diagnosis | An increase in geographic remoteness was associated with a decrease in intentions to use a telephone-based support service; geographic remoteness did not predict perceived behavioural control; relationship between geographic remoteness and intention to use a telephone-based support service was partially mediated by stoicism and subjective norms ( | Very good |
| Studies on unmet needs of cancer survivors and support persons | |||||||||
| Ahern, 2015 (Australia) [ | Cancer survivors | Cross-sectional (10-year replication study) | 81% | 224 major cities, 62 inner regional, 39 outer regional, remote, or very remote | Participants were sources from two Australian databases: Register4 and the BCNA Review and Survey Group; rurality was defined by the Australian Bureau of Statistics (ABS) Remoteness Area (RA) code | Study used a previously validated survey; six questions were added | Australian women with breast cancer who had been diagnosed between 6 and 30 months before the start of the study | There were no statistically significant differences found in information issues received and satisfaction with sources of support based on geographic location; percentages of women using the newspaper as an information source was statistically significant lower ( | Good |
| Ahern, 2016 (Australia) [ | Cancer survivors | Cross-sectional (survey) | Not reported | 604 major cities, 207 inner regional, 91 outer regional, remote, or very remote | Participants were sources from two Australian databases: Register4 and the BCNA Review and Survey Group; an Australian Bureau of Statistics (ABS) Remoteness Area (RA) code was manually allocated to the physical residential address of each participant to identify their geographical location | Study used a previously validated survey; the Supportive Care Needs Survey (SCN-SF34); the Communication and Attitudinal Self-Efficacy Scale for cancer (CASE-cancer) | Australian women with breast cancer who had completed active treatment at least 6 months before start of the study | The analysis of unmet needs by geographical residence revealed two statistically significant findings: (1) outer regional, remote, and very remote areas were significantly more likely to report unmet needs in the choice about which healthcare service or hospital they attended ( | Good |
| Lynagh, 2018 (Australia) [ | Informative caregivers | Cross-sectional (population-based) | 35% | 792 urban and 193 rural | Recruited from 5 Australian state population-based cancer registries; residential postcodes were used to classify support persons as ‘rural’ or ‘urban’ based on the Accessibility and Remoteness Index of Australia (ARIA+) | The Support Person Unmet Needs Survey (SPUNS); the Depression Anxiety and Stress Scale (DASS-21) | Haematological cancer | Significantly higher proportion of rural support persons (76%) had at least one moderate/high/very high unmet need compared with urban support persons (64%, | Very good |
| Tzelepis, 2018 (Australia) [ | Cancer survivors | Survey | 35% | 1145 urban and 272 rural | Recruited from 5 Australian state population-based cancer registries; residential postcodes were used to classify support persons as ‘rural’ or ‘urban’ | The Survivor Unmet Needs Survey (SUNS); the Depression, Anxiety and Stress Scale (DASS-21) | Haematological cancer | Feeling tired was the most common high/very high unmet need for rural (15.2%) and urban (15.5%) survivors; the emotional health domain had the highest mean score for rural (M = 0.66, SD = 0.84) and urban (M = 0.73, SD = 0.92); in contrast, the access and continuity of care domain had the lowest mean unmet need score for rural survivors (M = 0.39, SD = 0.60) and urban survivors (M = 0.37, SD = 0.64); being a rural resident was associated with a decreased unmet emotional health domain score (ES = −0.06; 95% CI: −0.11 to −0.01) | Very good |
| White, 2011 (Australia) [ | Cancer patients | Cross-sectional (survey) | 47% | 383 metro, 234 rural, and 169 remote | Participants were identified through the Western Australian Cancer Registry (WACR); to determine geographical areas, the Australian Bureau of Statistics (ABS) remoteness classes were adapted using the ABS classifications and collapsed into metropolitan (ABS = 0); rural/regional (ABS = 1 and 2); and remote (ABS = 3 and 4) | The Long Form Supportive Care Needs Survey (SCNS-LF59) | Various (6 months to 2 years post-diagnosis) | Participant needs did not vary by geographical location, with no significant differences found for any of the 15 items; the item for which the greatest, albeit non-significant ( | Very good |
| Studies on needs and quality of life | |||||||||
| Cahir, 2017 (Ireland) [ | Cancer survivors | Cross-sectional | 66% | 698 rural and 870 urban | Women with breast cancer were identified in August 2015 from the National Cancer Registry Ireland (NCRI) database; a composite measure of urban–rural classification was created using three indicators; settlement size, population density, and proximity to treatment hospital | The Functional Assessment of Cancer Therapy (FACT-G); an endocrine subscale (ES) | Women with breast cancer 1–5 years post-diagnosis | The association between urban–rural residence/status and QOL and endocrine symptoms was assessed using linear regression with adjustment for sociodemographic and clinical covariates; in multivariable analysis, rural survivors had a statistically significant higher overall QOL ( | Very good |
| Pateman, 2018 (Australia) [ | Cancer patients | Prospective study with baseline (prior to treatment), 1 month, and 6 months post-treatment | 86% baseline and 56.8% lost to follow-up | 48 major city, 25 inner regional. 18 outer regional, 3 remote, 1 very remote | Tertiary hospital in Brisbane, Australia; rurality was classified according to the Australian Standard Geographic Classification-Remoteness Area (ASCG-RA) system | The University of Washington Quality of Life Survey (UW-QOL) | Newly diagnosed patients who were referred for the diagnosis, and/or treatment of head and neck cancer | At baseline, the regional/remote group scored significantly worse in the pain domain compared with the metropolitan group ( | Very good |
| Pedro, 2014 (United States) [ | Cancer survivors | Cross-sectional (survey) | 35% for RUCC 7, 31% for RUCC 8, and 41% for RUCC 9 | 49 RUCC 7, 28 RUCC 8, 14 RUCC 9 | Participants were recruited from the Colorado Central Cancer Registry (CCCR); rurality was based on the 2003 Rural-Urban Continuum Codes (RUCCs): RUCC 7 (urban population of 2,500–19,999, not adjacent to a metro area), RUCC 8 (complete rurality or less than 2,500 urban population, adjacent to a metro area), and RUCC 9 (complete rurality or less than 2,500 urban population, not adjacent to a metro area) | The Rosenberg Self-Esteem Scale (RSES); the Personal Resource Questionnaire (PRQ) 2000, a measure of social support; and the European Organisation for the Research and Treatment of Cancer Quality of Life Core 30 (EORTC QLQ-C30) | Various | A significant difference was noted between RUCC 7 and RUCC 9 in social functioning ( | Very good |
| Thomas, 2014 (Ireland) [ | Cancer survivors | Cross-sectional (population survey) | 59% | 361 urban and 214 rural | The National Cancer Registry Ireland was used; 3 composite measures for defining rurality were used: self-reported area, distance from the participant’s current residence to the hospital from the registry, and population density | The Functional Assessment of Cancer Therapy (FACT-G) — specific to head and neck cancer survivors (FACT-HN) | Head and neck cancer (at least 8 months post-diagnosis) | Controlling for demographic and clinical variables, rural survivors reported higher physical (coefficient 1.27, bias-corrected and accelerated 95% CI 0.54–2.43), emotional (coef. 0.99, 95% CI 0.21–2.02), and HNC-specific (coef. 1.55, 95% CI 0.32–3.54) QOL than their urban counterparts; social and functional QOL did not differ significantly | Very good |
| Thomas, 2015 (Ireland) [ | Cancer survivors | Cross-sectional (survey) | 39% | 166 remote and 330 not remote | The National Cancer Registry Ireland was used; distance from residence to hospital was used to define rurality ‘urban’ based on the Accessibility and Remoteness Index of Australia (ARIA+) | The European Organisation for the Research and Treatment of Cancer Quality of Life Core 30 (EORTC QLQ-C30) | Colorectal cancer (at least 6 months post-diagnosis) | Living remote from the treating hospital was associated with lower physical functioning (coefficient −4.38 [95% CI −8.13, −0.91]) and role functioning (coef. −7.78 [−12.64, −2.66]) among all colorectal cancer survivors; in separate gender models, remoteness was significantly associated with lower physical (coef. −7.00 [−13.47, −1.49]) and role functioning (coef. −11.50 [−19.66, −2.65]) for women, but not for men; remoteness had a significant negative relationship to global health status (coef. −4.31 [−8.46, −0.27]) for men lowest mean unmet need score for rural (M = 0.39, SD = 0.60) and urban (M = 0.37, SD = 0.64) | Very good |
| Studies on needs and psychological morbidity | |||||||||
| Andykowski, 2014 (United States) [ | Cancer survivors | Cross-sectional | 26% cancer group; 23% health control group | 193 cancer group; 152 health control match | Cancer survivors were recruited from the population-based SEER Kentucky Cancer Registry (KCR); ruralness of residence was categorised based on county of residence using 2003 United States Department of Agriculture Rural–Urban Continuum (RUC) Codes | The Medical outcomes study 36-item short-form health Survey (SF-36); the Hospital Anxiety and Depression Scale (HADS); the Distress Thermometer (DT); Perceived Stress Scale (PSS) | Non-small cell lung cancer 10–15 months post-diagnosis | 43% of rural reported clinically important distress (HADS-Total ≥ 15) compared with 24% of urban survivors ( | Very good |
| Andykowski, 2017 (United States) [ | Cancer survivors | Cross-sectional | 26% | 117 rural and 76 urban | Cancer survivors were recruited from the state-wide, population-based, Surveillance Epidemiology and End Results (SEER) Kentucky Cancer Registry (KCR); ruralness of residence was categorised based on county of residence using the 2003 United States Department of Agriculture | The Posttraumatic Growth Inventory (PTGI); the Benefit-Finding Questionnaire (BFQ); the Hospital Anxiety and Depression Scale (HADS); the Medical outcomes study 36-item short-form (SF-36) | Non-small cell lung cancer 10–15 months post-diagnosis | No significant difference was found between rural and urban for BFQ total scores; rural and urban differ with regard to PTGI total scores ( | Very good |
| Carey, 2017 (Australia) [ | Informative caregivers | Cross-sectional | 35% returned complete survey; 66% of survivors had a support person | 187 rural and 783 urban | Recruited from 5 population-based cancer registries in Australia; the Accessibility and Remoteness Index of Australia (ARIA+) classification was used to define rurality | The Depression, Anxiety, and Stress Scale (DASS-21); the Support Person Unmet Needs Survey (SPUNS) | Haematological cancer | No significant differences in proportion of urban versus rural support persons in elevated levels of depression (21% vs 23%), anxiety (16% vs 17%), or stress (16% vs 20%); odds of having at least 1 DASS outcome increased between 12 and 18% for each additional high/very high unmet need ( | Very good |
| Corboy, 2019 (Australia) [ | Cancer survivors | Cross-sectional | Not reported | 286 urban and 161 rural | Registered with Australia Medicare; geographic remoteness was defined by the Accessibility/Remoteness Index of Australia (ARIA+) | The Brief Symptom Inventory (BSI); the Functional Assessment of Cancer Therapy–Prostate Cancer Subscale (FACT-PC); the Need for Control and Self-Reliance Subscale of the Barriers to Help Seeking Scale; the Liverpool Stoicism Scale (LSS) | Australian men who had undergone a radical prostatectomy as treatment for prostate cancer | Average psychological distress score measured by BSI was 49.25 (SD = 12.54); similar percentage of men in the urban cohort ( | Very good |
| Grov, 2011 (Norway) [ | Cancer survivors | Cross-sectional | 53% | 223 urban and 256 rural; 1437 control | The Nord-Trøndelag County of Norway consists of four cities, which were defined urban; other municipalities were defined a rural | The Hospital Anxiety and Depression Scale (HADS); Rosenberg Self-Esteem instrument | Elderly cancer survivors (ECSs) with various cancer; short-term ECSs 1–5 years post-diagnosis, long-term beyond 5 years | Rural versus urban areas of living explained 6.3% variance in being a rural inhabitant; self-reported health was significant on the model and explained 3% of the variance between rural and urban (OR = 2.03, 95% CI 1.28–3.21, | Good |
| Gunn, 2020 (Australia) [ | Cancer survivors | Cross-sectional (survey) | 11.8% | 3379 urban, 776 rural, 140 remote | Data collected between January 2010 and June 2015 were obtained from the South Australian Monitoring and Surveillance System (SAMSS) | Self-reported health, psychological distress (Kessler Psychological Distress Scale – K10), suicidal ideation (four questions from the General Health Questionnaire) | Various | No difference in the proportion of cancer survivors who reported high/very high levels of distress (urban 9.6% vs rural 7.0%, | Very good |
| Hall, 2016 (Australia) [ | Cancer patients and survivors | Cross-sectional (survey) | 35% | 1144 urban and 270 rural | Survivors were recruited from 5 Australian state population-based cancer registries (registries A, B, C, D, and E); residential postcode at diagnosis classified by the Australian Bureau of Statistics Accessibility and Remoteness Index of Australia (ARIA+) defined rurality | The Depression Anxiety and Stress Scale 21-item version (DASS-21) | Haematological cancer | Of urban survivors, 25% ( | Very good |
| Schootman, 2013 (United States) [ | Cancer survivors | Cross-sectional | 57.4% in 2009 and 59.5% 2010 | 471 rural and 3088 control; 701 urban and 5270 control | The 2009-2010 Missouri Behavioural Risk Factor Surveillance System was used; the county of residence was coded according to its location in a metropolitan statistical area (MSA) as defined by the US Office of Management and Budget | Self-reported by interview; the Patient Health Questionnaire (PHQ-8) | Various | Prevalence of fair/poor health was 38.5% among rural compared with 27.4% among urban survivors and less than 20% among both control groups; after controlling for sociodemographic factors, prevalence of fair/poor health was similar for rural and urban survivors but higher among controls; rural survivors (48.8%) had a higher prevalence of fatigue than rural controls (27.9%) and urban survivors (36.1%) reported more fatigue than urban controls (26.5%); no differences among the 4 groups when controlling for sociodemographic characteristics, access to medical care, or chronic conditions; percentage who reported getting social and emotional support did not vary significantly across the 4 groups; rural survivors (61.7%) were less likely to receive follow-up care instructions than urban (78.2%) survivors ( | Very good |
| Watts, 2016 (Australia) [ | Cancer patients | Cross-sectional | Not reported | 67 major city, 162 inner regional, 189 outer regional, 21 remote, and 2 very remote | Distress screening data were routinely collected following implementation of screening across seven Western Australia health regions; the Australian Standard Geographical Classification (ASGC) Remoteness Areas was used | Distress Thermometer and Problem List (DT-PL) | Various | No significant differences in distress levels across the remoteness categories ( | Very good |
| Studies on financial issues and travel issues | |||||||||
| Paul, 2013 (Australia) [ | Cancer patients | Registry-based study | 37% | 149 urban and 119 rural | A state-based (Western Australia) cancer registry in Australia; rurality defined by the Accessibility and Remoteness Index of Australia (ARIA+) | The Depression Anxiety and Stress Scale (DASS-21) | Haematological cancer who had been diagnosed in the previous 3 years | 53% in outer regional/remote locations had to relocate for treatment compared to 20% from inner regional and 3.4% from metropolitan locations ( | Very good |
| Vanderpool, 2020 (United States) [ | Cancer survivors | Survey | ASK was 22% and HINTS was 34% | 179 ASK and 504 HINTS | Appalachian Kentucky; Geographic strata were based on the 2013 U.S. Department of Agriculture’s Rural-Urban Continuum Codes (RUCC): strata I included counties with RUCC codes 1–3, which are considered metro counties, while strata II (RUCC 4–5), strata 3 (RUCC 6–7), and strata 4 (RUCC 8–9) included counties with population sizes of 20,000 or more, 2,500–19,999, and less than 2,500, respectively | The Health Status of Kentucky (ASK) survey; Health Information National Trends Survey (HINTS) | Various | 77% of the Appalachian survivors resided in counties designated as strata 3–4; geographic strata was significantly correlated with cancer-related financial distress among Appalachian Kentucky survivors with higher percentages of distress reported among residents of strata 3 and 4 ( | Very good |
| Zahnd, 2019 (United States) [ | Cancer survivors | Cross-sectional (population-based survey) | Between 32 and 40.0% | 1136 urban and 223 rural | National survey by the National Cancer Institute; rural-urban status was determined using the 2003 US Department of Agriculture Rural-Urban Continuum Codes (RUCC) | The National Cancer Institute’s (NCI) Health Information National Trends Survey (HINTS): 2012, 2014, and 2017 | Various | Overall prevalence of financial burden was 20% higher among survivors; 50.4% of total rural cancer survivors indicated financial problems following their diagnosis and treatment compared to 38.8% of urban survivors (difference = 11.6%, | Very good |
| Zucca, 2011 (Australia) [ | Cancer patients | Population-based longitudinal cohort (at 6 and 12 months) | 44% | 890 major cities, 373 inner regional, 136 outer regional, and 11 remote | Participants were selected from NSW and Victorian Cancer Registries; cut-point for travel burden as ≥ 2 h one way | Data were obtained by self-report survey and from the Cancer Registries; single item from The European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30 v3); single item from the Supportive Care Needs Survey Access to Services Module | Various (during the first 12 months after diagnosis) | During the first 12 months after diagnosis, outer regional/remote residents had the greatest travel burden; 61% travelled at least 2 h one way to receive treatment and 49% lived away from home to receive treatment; strongest associates of travel burden were living in regional/remote areas (OR = 18.9–135.7), having received surgery (OR = 6.7) or radiotherapy (OR = 3.6); between 6 and 12 months after diagnosis, 2% of patients declined cancer treatment because of the time it would take to get to treatment; patients who travelled more than 2 h or lived away for treatment reported significantly greater financial difficulties (38%; 40%) than those who did not (12%; 14%), even after adjusting for covariates | Very good |
| Studies on satisfaction with life | |||||||||
| Cipora, 2018 (Poland)[ | Cancer patients | Cross-sectional | Not reported | 48 rural and 73 urban | Women who had undergone surgical treatment in the Sub-Carpathian Oncology Centre in Brzozów, Poland | The Satisfaction with Life Scale (SLS) | Women with ill breast cancer | Level of satisfaction with life varied according to place of residence: urban was 22.04 (6.15 sten score) vs 18.56 (4.85 sten score) for rural women ( | Good |
Quantitative studies including only rural survivors
| Author, year (country) | Population | Study design | Response rate | Sample size | Setting | Measure | Type of cancer | Results | Study quality |
|---|---|---|---|---|---|---|---|---|---|
| Studies on the use of formal and informal mental health resources | |||||||||
| Corboy, 2011 (Australia) [ | Cancer patients and survivors | Cross-sectional | Not reported | 40 inner regional, 31 outer, and 5 remote | The men were living in rural and regional areas within the Grampians region in the state of Victoria, Australia; rural and regional areas were defined using the ARIA+ index (Moderately Accessible, Accessible, and Remote) | List of Physical Complaints; Brief Symptom Inventory (BSI); Social Support Subscale of the Coping Resources Inventory | Men with various cancers | 27 participants met the definition of caseness (i.e., BSIT-score of 63), indicating probable clinically significant psychological distress; regression analysis demonstrated that level of physical distress was significant for psychological distress; 82% were aware of at least one formal service offering emotional support and 49% had used such a service; telephone- and Internet-based services were most used type of support; lower age was a predictor of participation in a formal service (average 8 years younger; M = 65.00 (SD = 7.68) (SD = 11.2) versus M = 73.05 (SD = 7.68)) | Poor |
| McDowell, 2011 (Australia) [ | Cancer survivors | Longitudinal study (baseline and 6 months) | 61% | 396 | Regional cancer treatment centre in Queensland, Australia; rurality not defined | The ENRICHD Social Support Instrument; the Impact of Events Scale (IES) | Various | 14% of cancer patients reported using psychosocial support; females (OR = 2.73; 95% CI 1.26–5.94) and patients with more positive attitudes (OR = 1.69; 95% CI 1.03–2.79) towards help seeking were more likely to have utilised a support service; the relationship between positive attitudes to seeking help and psychosocial support service use was mediated by behavioural intentions (OR = 1.91, 95% CI 1.26–2.90); patients reported high levels of social support (M = 20.81, SD = 4.78), and low social constraints (M = 1.68, SD = 0.69) | Very good |
| Studies on unmet needs of cancer patients and survivors | |||||||||
| Bazzell, 2015 (United States) [ | Cancer patients | Cross-sectional (survey) | Not reported | 52 | Participant were recruited at the American Cancer Society sponsored events; the Health Resources and Services Administration of the US Department of Health and Human Services definition of rural was used | The Survivors’ Unmet Needs Survey (SUNS) | Failed to collect data on this; mean years since diagnosis was 9.65 | 25% of the rural survivors reported high/very high emotional health or access and continuity of care unmet needs; ANOVA results provide evidence that there is a difference between survivor years since diagnosis and access and continuity of care unmet needs ( | Very good |
| Glasser, 2013 (United States) [ | Cancer survivors and their significant other | Cross-sectional (survey) | Not reported | 29 survivors and 15 partners | Survivors of cancer were recruited from two rural community cancer programs in Illinois; rurality not defined | The Distress Thermometer (DT); the Durham Geriatric Research, Education and Clinical Centre (GRECC) Depression Scale; the PROMIS SF-Global Health inventory; the Cancer Survivors’ Unmet Needs (CaSUN) | Not reported | 38% of survivors reported fatigue and 28% depression; more than 50% of survivors and partner groups were at risk for depression, and 34% of the survivors were at risk for some type of psychosocial problem that currently required assistance; survivors expressing unmet needs tended to score worse than those expressing no needs for depression, distress, chronic conditions, quality of life, and general health | Good |
| Riley-Clark, 2014 (United States) [ | Cancer patients | Cross-sectional (survey) | Not reported | 47 | Adirondack region of northern New York; rurality not defined | Self-designed questionnaire | Various | Support groups were found helpful, while others indicated not attending cause of lack of knowledge about current groups and times, and lack of evening meetings and transportation issues; high degree of interest in a counsellor, yoga or relaxation classes, however not present in rural areas | Poor |
| Studies on needs and quality of life | |||||||||
| Coker, 2018 (United States) [ | Cancer survivors | Cross-sectional | 40% in Kentucky and 41% in North Carolina | 3320 | The Kentucky Cancer Registry (KCR) and the North Carolina Central Cancer Registry (NCCR) were used; Beale code was used to define rurality | The Functional Assessment of Cancer Therapy-General (FACT-G); Functional Assessment of Chronic Illness Therapy-Spiritual Well-being (FACIT-SP); the Perceived Stress Scale; the Brief Symptom Inventory (BSI) | Women with various cancers (diagnosed in the prior 12 months) | Unadjusted FACT-G scores were poorer among Appalachian versus non-Appalachian residents for total scores (61.24 vs 63.39) and physical (13.03 vs 13.91), emotional (13.67 vs 14.09), and work/life functionality (16.66 vs 17.31) domains; higher stress scores (3.49 vs 3.22) were reported by participants living in Appalachian; additional adjustment for depression and stress at diagnosis, FACT-G total, physical, work/life functionality domains, and comorbid conditions remained associated with Appalachian residence; differences by Appalachian residence remained only for FACT-G physical and number of comorbid physical conditions, after adjusting for socioeconomic factors | Very good |
| Costrini, 2011 (United States) [ | Cancer survivors | Cross-sectional | Not reported | 39 | Patients were drawn from the 2001–2010 records of Georgia Gastroenterology Group and from public solicitations in rural press outlets; rural zip codes (as defined by the 2000 Census) in the rural zones west of Savannah and east of Macon were used to define rurality | The Medical outcomes study 36-item short-form health survey (SF-36); the Functional Assessment of Cancer Therapy-General (FACT-G) with the FACT-Colorectal | Colorectal cancer | Of the 71% of patients who had to travel more than 100 miles round, 8% judged distance as an impediment to care; financial impact was significant and limited in 18% of patients; rural Georgia self-report worse general health, psychical functioning, physical role limitations, bodily pain, and vitality scores compared to general population ( | Poor |
| Steenland, 2011 (United States) [ | Cancer patients | Follow-up study (baseline, 6 and 12 months) | 58% | 260 | Southwest Georgia; rurality not defined | The Medical Outcomes Study Short-Form 12-item Health Survey (SF-12); the University of California, Los Angles, Prostate Cancer Index | Prostate cancer (newly diagnosed) | Self-reported physical ( | Very good |
| Studies on needs and psychological morbidity | |||||||||
| Befort, 2011 (United States) [ | Cancer survivors | Cross-sectional (survey) | 77% | 770 | Three cancer centres located in rural Kansas; rural designation was defined by the ZIP code approximation of the Rural-Urban Commuting Area (RUCA) codes | Study developed survey modelled after the Breast Cancer Prevention Trial Symptom Checklist (BCPT) | Women with breast cancer (3 months to 6 years post-treatment) | Premenopausal women were more likely to experience depression (39% vs 23%) at the time of treatment; across the total sample, the most common concerns were fear of recurrence (52%), diminished physical strength (39%), change in body image (31%), and financial stress (19%); women premenopausal at diagnosis were significantly more likely than postmenopausal women to report psychosocial factors, including fear of recurrence (68% vs 47%), fear of death (16% vs 5%), change in body image (43% vs 27%), change in relationships (21% vs 5%), and financial stress (32% vs 15%; all | Very good |
| Duggleby, 2014 (Canada) [ | Informative caregivers | Cross-sectional (prospective correlational design) | 16% | 122 | Western Canadian provincial cancer registries (Alberta and Saskatchewan); home address had to be rural postcode: postal codes in Alberta include anyone who does not live in the two tertiary or five regional centres | The Herth Hope Index (HHI); the General Self-Efficacy Scale (GSES); the Non-Death Version Revised Grief Experience Inventory (NDRGEI); the Short Form Health Survey (SF-12v2) | Various | Mental health/well-being was found to be a predictor of hope for rural women caregivers ( | Very good |
| Lashbrook, 2018 (Australia) [ | Cancer survivors | Cross-sectional | 88% | 85 regional and 49 rural | Study was conducted at the Riverina Cancer Care Centre (RCCC) and its two outreach clinics located in outlying rural areas of the Riverina region of southern NSW, Australia; Accessibility/Remoteness Index of Australia (ARIA) was used for the classification of remoteness | DT; Patient-Reported Outcome Measurement Information System (PROMIS) | Survivors with breast, prostate, colorectal, or lung who had completed treatment | Cancer survivors without a partner (OR = 2.60, 95% CI 1.06–6.39) and with advanced cancer at diagnosis (OR = 2.70, 95% CI 1.20–6.08) had higher odds for anxiety; those with colorectal cancer (OR = 5.80, 95% CI 1.33–24.91), who lived without a partner (OR = 3.90, 95% CI 1.46–10.35) and had a higher educational level (OR = 4.14, 95% CI 1.60–10.91) had increased odds of depression; participants living in rural areas (OR = 5.0, 95% CI 1.75–14.29) had high odds of having sleep disturbance compared to regional; those who had surgery had high odds (OR = 7.64, 95% CI 2.40–24.20) for sleep disturbance, while those of disadvantaged socioeconomic status (OR = 0.30, 95% CI 0.12–0.78) had decreased odds of having abnormal scores for sleep disturbance; cancer survivors with a higher education had increased odds of having abnormal scores for fatigue (OR = 2.3, 95% CI 1.06–5.10); those with advanced stage at diagnosis had increased odds of having abnormal scores for pain interference (OR = 2.71, 95% CI 1.22–6.02) | Very good |
| Schlegel, 2012 (United States) [ | Cancer patients | Longitudinal study (4 surveys over 13 months) | 92% second survey, 91% third, and 90% fourth | 224 | 9 radiation clinics in Missouri; rurality was quantified with a continuous variable and defined by 2 indices of rurality (county code and city population) | The Centre for Epidemiologic Studies-Depression Scale | Women with breast cancer | Women who were not married ( | Very good |
| Studies on financial issues | |||||||||
| Mandaliya, 2016 (Australia) [ | Cancer patients | Cross-sectional | 78% | 45 | Rural oncology clinic in the New England region, NSW, Australia; rurality not defined | The Quality of Life in Adult Cancer (QLACS) Survivors Scale; the Personal and Household Finances Questionnaire (HILDA) | Various (3–5 years post-treatment) | There was no evidence of associations between any demographic variable and either financial stress or cancer-specific quality of life domains; financial stress was however significantly associated with the cancer-specific quality of life domains of appearance-related concerns (estimate 0.37, | Very good |
| Pisu, 2017 (United States) [ | Cancer survivors | Longitudinal study (data from a trial at baseline, 6, 9, and 12 months) | 16% attrition | 432 | Data were used from the Rural Breast Cancer Survivor Intervention trial; rural eligibility was established based on residence in one of 33 Florida rural counties or in a rural pocket of one of 34 Florida urban counties | The Work and Finances Inventory (WFI); the Breast Cancer Survivor Socio-demographic and Treatment Survey; the Centers for Epidemiologic Studies Depression Scale (CES-D) | Women with breast cancer | Mean out-of-pocket (OOP) burden was 9% at baseline and between 7 and 8% at the next assessments; the predicted mean OOP burden was higher at baseline than in the other assessments ( | Very good |
Mixed methods studies
| Author, year (country) | Population | Study design | Response rate | Sample size | Setting | Measure | Type of cancer | Results | Study quality |
|---|---|---|---|---|---|---|---|---|---|
| Mixed methods studies comparing urban and rural participants | |||||||||
| McNulty, 2015 (United States) [ | Cancer survivors | Mixed methods | Not reported | 42 urban Alaska and 34 urban Oregon; 26 rural Alaska and 30 rural Oregon; 19 interviews (convenience sample) | Cancer survivors living in Alaska and Oregon; Alaska rural was defined by > 1-h travel time to a major regional hospital; Oregon rural was defined as a geographic area that is at least 30 miles by road from an urban community | The Impact of Cancer version 2 (IOCv2); the Memorial Symptom Assessment Scale-Short Form (MSAS-SF) | Various (average 6.7 years post-treatment) | Overall comparisons between location (rural/urban) and region (Alaska/Oregon) showed no statistically significant or meaningful differences between groups; follow-up tests comparisons between 4 places showed significant results for: worry, negative impact, and employment concerns; rural-urban differences from interview data included access to healthcare access, care coordination, connecting and community, thinking about death and dying, public/private journey, and advocating for self and healthcare services | Very good |
| Mixed methods studies on rural participants | |||||||||
| Hubbard, 2015 (Scotland) [ | Cancer patients and survivors | Mixed methods (survey and semi-structured telephone interviews) | 25% | 44; 10 interviews (purpose sample) | Sample was obtained from Breast Cancer Care’s electronic database in rural Scotland; rurality was defined by residential postcode | The short-form Supportive Care Needs Survey (SCNS-SF34) | Women with breast cancer (55% were receiving treatment) | 57% of participants reported at least one moderate to high unmet need and 11% reported low needs; the most prevalent moderate to high need was being informed about cancer in remission, fears about the cancer spreading, being adequately informed about the benefits and side effects of treatment and concerns about the worries of those close to you; women ≤ 5 years reported greater unmet need than those > 5 years from diagnosis, and statistically significantly higher needs were observed for the health systems and information domain (67% vs 22%; Pearson’s | Good |
| Martinez-Donate, 2013 (United States) [ | Cancer patients | Mixed methods based on the Chronic Care Model (semi-structured, interviews, and health literacy assessments; focus groups and surveys with clinical staff) | Not reported | 53 interviews; 30 completed STOFHLA; 51 completed follow-up; 41 clinical staff (purposive sample) | Five clinics in rural Wisconsin | The Short Test of Functional Health Literacy in Adults (STOFHLA); follow-up based on the Consumer Assessment of Healthcare Providers and Systems and the Assessment of Cancer Care and Satisfaction surveys | Various (receiving cancer care) | Results aligned with 4/5 dimensions of the Chronic Care Model: (1) limited availability of formal support services and cultural values of stoicism, pragmatism, independence, privacy, and self-reliance were often in conflict with patients’ needs resulting in patients suffering in silence; (2) all who completed STOFHLA reported adequate health literacy, but staff reported that patients struggle with understanding medical information; (3) need for greater levels of care coordination, burden of assessing non-medical needs, and shorter clinical forms; and (4) shared decision making, patient empowerment, and verbal communication strategies | Good |
| Torres, 2015 (United States) [ | Cancer survivors | Mixed methods (survey and in-depth, open-ended questions focus group interviews) | Not reported | 31 (snowball sampling) | Three rural counties in eastern North Carolina; rurality not defined | Survey | Women with breast cancer | The main themes were: (1) breast cancer diagnosis (most common ways were self-discovery, via age-recommended screening, and/or their gynaecologists); (2) psychosocial well-being (fear, coping mechanisms, and QOL concerns); and (3) quality of care factors (doctor-patient relationship, side effects of treatment, adherence to follow-up care, and financial resources) | Good |