Abstract
Background. A cancer diagnosis may lead to psychosocial problems and physical symptoms that can be relieved during rehabilitation. The aim of this study was to analyse patient-perceived unmet needs of rehabilitation close to time of diagnosis, i.e. frequencies of unmet needs and the association with sociodemographic characteristics, cancer type and treatment. Material and methods. All adult residents of Denmark diagnosed with cancer for the first time from 1 May to 31 August 2010 were mailed a patient questionnaire two to five months following diagnosis. The study population was identified by use of national administrative registers. Data on rehabilitation, family situation, education, and cancer treatment were obtained from the questionnaire, while sex, birth year and cancer type were obtained from the Danish National Patient Registry. The association between each type of unmet needs and the variables sex, age, cancer diagnosis, treatment, education, cohabitation status, and children (living at home and away from home) was analysed using multiple logistic regression. Results. Among the 4346 participants (64.7%) unmet needs were reported with regard to talking to patients in the same situation (24.1%), counselling with a psychologist (21.4%), physical rehabilitation (18.8%), practical help (17.3%), and counselling related to work or education (14.8%). Differences were observed with regard to type of unmet needs, sociodemographic and clinical characteristics, but generally, young age, male sex, low educational level and living alone increased the adjusted odds ratios of unmet needs. Breast cancer and to some extent melanoma cancer decreased the odds. Conclusion. Unmet needs of rehabilitation are frequent during the early cancer trajectory and sociodemographic and clinical inequalities exist. The results support guideline recommendations of integration of cancer rehabilitation from the beginning of the cancer trajectory. Early interventions tailored to men, patients with low educational level, living alone, or treated with chemotherapy may help counterbalancing social and clinical inequalities in the long run.
Being diagnosed with a potentially life-threatening disease like cancer may suddenly lead to psychosocial problems and concerns for the individual. Surgery, chemotherapy and radiotherapy may add physical symptoms like pain, fatigue, and bodily changes. Within a short time the patient's lifeworld, self- understanding, and concerns have changed [Citation1,Citation2].
Studies have shown that up to two thirds of cancer patients experience substantial physical, psychological and social problems due to the disease and treatment [Citation3,Citation4]. Support from healthcare and social services is often inappropriate, and patients report high levels of unmet needs following treatment and even a long time after [Citation3,Citation5,Citation6]. Rehabilitation aims to enable people with disabilities to reach and maintain optimal physical, sensory, intellectual, psychological and social function [WHO: World Health Organization]. The evidence of effective interventions targeted problems relevant for cancer rehabilitation is growing, and rehabilitation is increasingly integrated in cancer programmes [Citation7,Citation8]. Recommendations include individual needs assessment for all cancer patients at several time points, the first being the time of diagnosis. Thus, problems and interventions should be addressed from the beginning of the cancer trajectory.
The intention to provide high quality of care to all cancer patients in all phases underlines the need for knowledge about prevalence of problems and disabilities, and patient groups most in need of professional help [Citation9]. Future resources for rehabilitation should be tailored those most in need, among them patients experiencing substantial problems but inappropriate support. Sociodemographic and cancer type-specific differences may be established already at the beginning of the cancer trajectory and early support to vulnerable groups may prevent individuals from experiencing cancer-related disabilities. Patient groups most in need of additional help can be identified through analyses of patient surveys. The knowledge of unmet needs of rehabilitation during the very early phase of cancer is, however, scarce since most large-scaled studies have included patients in later phases [Citation3,Citation4,Citation10]. Based on a national sample of mixed-site cancer patients this study aimed to analyse patient-perceived unmet needs of rehabilitation close to time of diagnosis, i.e. frequencies of unmet needs and the association with sociodemographic characteristics, cancer type and treatment.
Material and methods
This study is based on a national questionnaire survey of all adult residents in Denmark diagnosed with cancer for the first time from 1 May to 31 August 2010, ‘The Experience of Cancer Patients during Diagnosis and Treatment, The Danish Cancer Society, 2011’ [Citation11]. The study population was identified by use of national administrative registers.
The study was approved by the Danish Data Protection Agency (file number 2012-41-0076). According to the Regional Scientific Ethics Committee, the Biomedical Research Ethics Committee System Act does not apply to this project.
Setting
In Denmark, the municipalities are responsible for cancer rehabilitation at the general level, while hospitals are responsible for highly specialised rehabilitation. Rehabilitation provided by the public healthcare system and the municipalities is mostly free of charge. In addition, private patient organisations like the Danish Cancer Society have various free offers, and private physiotherapists, psychologists, and alternative practitioners offer fee-for-service treatment and support. General practitioners act as gate-keepers to most parts of the healthcare system. For the more than 98% of the population listed with a general practice, consultations are free.
Data sources – administrative registers
All residents of Denmark are assigned a unique personal identification number allowing linkage between registries. This ID includes information on sex and birth year. The Danish Civil Registration System is a central register continuously updated with information about all people residing in Denmark and/or paying tax in Denmark, e.g. vital status and postal address [Citation12]. Any individual can request his/her address to be blocked for researchers. The Danish National Patient Registry contains information from all Danish hospitals on all inpatient contacts since 1977 and, in addition, all ambulatory and emergency department contacts since 1995 [Citation13]. For each admission and contact, dates and diagnosis according to the International Classification of Diseases (ICD-10) are included. The Danish Cancer Registry is a national research register founded in 1942. It covers all incident cases of cancer diagnosed or treated at Danish hospitals. Since 1987 reporting has been mandatory, and coverage is regarded to be complete and the diagnostic validity high [Citation14].
Study population
Information on all 18 + year olds registered with a cancer diagnosis (ICD-10), between 1 May and 31 August 2010 were retrieved from the Danish National Patient Register. Non-melanoma skin cancers were excluded. By linkage with information about prior cancer diagnosis registered in the Danish National Patient Register and the Danish Cancer Registry, first time cancer cases were identified. Linkage with the Danish Civil Registration System provided information about vital status and postal address. Eligible for the survey were individuals alive at the time of invitation, who resided in Denmark at an address not blocked for researchers.
Patient questionnaire
All data on rehabilitation, family situation, education, and cancer treatment were obtained from the patient questionnaire ‘The Experiences of Cancer Patients during Diagnosis and Treatment, The Danish Cancer Society, 2011’ [Citation11]. The questionnaire was sent out on two dates, two to five months following date of diagnosis. Reminders were sent out after three weeks and included a new copy of the questionnaire. Both letters included a prepaid envelope.
The 28-page questionnaire was developed to give a broad insight into cancer patients' experiences with the Danish healthcare system, from first contact with a physician for signs of cancer. It included five items covering different aspects of unmet needs of rehabilitation [Citation13]. Participants were asked:
1. Have you received the help you need in relation to:
a. Counselling with a psychologist?
b. Practical help to maintain everyday life (e.g. home help services)?
c. Counselling related to working life/education?
d. Talking to other patients in the same situation?
2. Do you think that your need for physical rehabilitation was fulfilled?
These questions had six answer categories: (‘yes, to a large extent’, ‘yes, to some extent’, ‘to a lesser extent’, ‘no, not at all’, ‘don't know’ and ‘irrelevant’). To study unmet needs, i.e. the situation where individuals to some degree had not received the help they needed, the answers to each item were dichotomised. The two categories were ‘unmet needs’ (‘no, not at all’, ‘to a lesser extent’ and ‘yes, to some extent’) and ‘no unmet needs’ (‘yes, to a large extent’ and ‘irrelevant’). Clinical information from the questionnaire included three types of cancer treatment; chemotherapy, radiotherapy, and surgery. Sociodemographic variables included educational level, cohabitation status (‘married/living together’, ‘widow/widower’ and ‘single’), ‘children living away from home’ and ‘children living at home’. The response categories for the items regarding cancer treatment and children were ‘yes’ and ‘no’. In the following ‘single status’ refers to people who ticked ‘single’ in the cohabitation status item. The six general educational categories were grouped into three according to the mean length. The item concerning physical rehabilitation was separately placed in the section of the questionnaire entitled ‘termination of cancer treatment’.
Register-based variables
Information on sex, birth year and cancer type was included from the Danish National Patient Registry [Citation15]. Cancer types were classified in larger groups according to ICD-10.
Statistical analysis
For each unmet need outcome, interactions between single factors [sex, age groups (quartiles), education and cohabitation] and between these single factors and cancer type were tested using the Wald test statistics. Ten interaction analyses were thus performed for each unmet need and multiplicity was handled by Bonferroni adjustment. P-values < 0.005 were considered statistically significant. In case of any significant findings the identified interactions were handled by appropriate stratification of the respective analyses. In addition to the stratified analyses, unstratified estimates are presented for the stratification variables. Logistic regression was used to analyse the association between each type of unmet needs and the sociodemographic variables (sex, age, education, cohabitation status, children living at home, and children living away from home) and clinical variables (cancer type, chemotherapy, radiotherapy and surgery). The associations between sociodemographic and clinical variables and unmet needs were estimated with adjustment for sex, age, cancer type, education and cohabitation. Due to the skewness in the age groups used for the descriptive statistics (18–39, 40–49, 50–59, 60–69, 70–79, and 80 + years) age was entered into the logistic regression models categorised into quartiles (19–58, 59–66, 67–74 and 75–96 years). No imputations were made for missing values, and the analyses included complete cases only. ‘Don't know’ answers were thus handled as missing. No adjustment for multiplicity was performed with regard to the regression analyses. Adjusted odds ratios (OR) are presented with 95% confidence intervals (CI) in brackets. Analyses were performed using Stata Release 11 (STATA Corp., College State, TX, USA).
Results
At the time of the survey 6720 of 8607 incident cancer cases were eligible since 927 patients had died, 53 resided outside Denmark, 617 had blocked access to their private address for research purposes, and 290 were excluded because of minor discrepancies in diagnosis or address. In total 4346 (64.7%) returned the questionnaire and were included in the study. shows some sociodemographic and clinical characteristics of the study participants. Mean age was 65.4 years (SD 12.2), and the number of males and females was almost equal. The three most frequent cancers were breast (22.6%), gastrointestinal (18.8%), and prostate cancer (16.6%).
Table I. Patient characteristics (n = 4346).
Unmet needs of rehabilitation
Unmet needs were most frequently reported with regard to talking to patients in the same situation (24.1%), followed by counselling with a psychologist (21.4%), physical rehabilitation (18.8%), practical help (17.3%), and counselling related to working life/education (14.8%) (). furthermore shows frequencies of unmet needs by sex, age and cancer type and includes numbers up to 46.7% (95% CI 37.8–55.6) (unmet needs of counselling with a psychologist among 18–39-year-olds). The three highest frequencies were all above 40% and observed in the young age group. Frequencies below 10% were observed for unmet needs related to work life/education among patients above 70 years, and unmet needs of physical rehabilitation and practical help among patients with melanoma cancer.
Table II. Frequency of different unmet needs, by sex, age and cancer type during early cancer trajectory. Absolute numbers (n/N) and percentages are shown, the latter with 95% confidence intervals (CI) in parentheses.
Association with clinical characteristics
Due to significant interactions, the analyses of unmet needs of counselling related to work life/education were stratified on sex (interacting with cohabitation), while the analyses of unmet needs of practical help were stratified on education (interaction with cohabitation). Breast cancer was used as a reference group, whereas prostate cancer was used as reference of the one male strata. All types of cancer, except melanoma cancer, significantly increased the odds of unmet needs of counselling with a psychologist [OR 1.65 (1.13–2.42) to 2.87 (1.85–4.45)] (). Most cancer types generally increased the odds of unmet needs with regard to talking to other patients and unmet needs of practical help to patients with low educational level. Among patients in the highest educational group only cancer of the urinary tract showed higher odds of unmet needs of practical help.
Table III. Patients' perception of unmet needs of rehabilitation. For each type of rehabilitation adjusted odds ratios (OR) are shown with regard to sociodemographic and clinical characteristics. 95% confidence intervals (CI) in parentheses.
Chemotherapy increased the odds of unmet needs for physical rehabilitation and talking to other cancer patients [OR 1.75 (1.22–2.50) and 1.31 (1.08–1.59) respectively]. The different treatment entities showed no other statistically significant odds ratios ().
Association with sociodemographic characteristics
Men had higher odds than women of unmet needs with regard to psychological support, talking to patients in the same situation and practical help if their educational level was < 12 years (). The youngest age group showed higher odds of unmet needs of all rehabilitation items. However, with regard to practical help this age association was statistically significant solely for the educational middle group (10–12 years of education). Compared to being married/cohabiting, single status increased the odds of all rehabilitation items, except for women with regard to counselling related to work life/education. Having children at home increased the odds of unmet needs of psychological support [OR 1.64 (1.22–2.20)] and talking to other patients [OR 1.32 (1.00–1.73)], whereas having children away from home showed no significant associations. Low educational level increased the odds of unmet needs of psychological support, practical help and talking to other patients, whereas high educational level increased the odds of unmet needs of physical rehabilitation.
Discussion
This large-scaled national study underlines the fact that unmet needs of rehabilitation are frequent during the very early phase of cancer. Both sociodemographic and clinical characteristics were associated with unmet needs. Young age, male sex, low educational level and living alone generally increased the odds, whereas breast cancer and to some extent melanoma cancer decreased the odds of unmet needs.
A population-based sampling method based on validated registers was used in the study [Citation12–14]. However, selection mechanisms may have biased study results. Previous analysis has shown that the majority of the 617 (8.1%) patients not invited for the study because of blocking of addresses to researchers were female, young and unmarried [Citation11]. A high response rate (64.7%) was obtained, but responders showed a slight overrepresentation of females (50.8% compared to 44.3% among non-responders), people below the age of 80 years (87.9% vs. 78.7%), and being married (68.2% vs. 49.5%) [Citation11]. Furthermore, in this type of survey people unable to read Danish or with poor reading skills are underrepresented. We therefore conclude that selection mechanisms may have biased the absolute levels slightly in the direction of lower levels of unmet needs, while the influence on the associations with sociodemographic and clinical factors is minimal. The item covering education was patient-reported, which may involve some misclassification. This misclassification is, however, not expected to be associated with the level of unmet needs. Like age and sex, cancer diagnoses were retrieved from a register known to be valid and complete [Citation13]. It therefore seems implausible that misclassification with regard to cancer type and educational level should have affected the study results.
The unmet needs questions were defined for this survey. Comprehensibility, acceptability and to some degree validity were tested through qualitative interviews during the design phase [Citation11]. The number of items covering unmet needs of rehabilitation was limited and relevant items may be missing, e.g. needs of information. The five items were chosen to cover important and well known types of professional help relevant for large groups of cancer patients. Although the possibility of blank areas, we conclude that they cover important information. The time frame of the unmet needs questions, i.e. the time period patients were asked about, was short, and we do not expect substantial influence on recall bias. Due to Danish rules all patients in need should have a so-called ‘rehabilitation plan’ at the end of hospital treatment, and therefore the item covering physical rehabilitation was placed in the section of the questionnaire entitled ‘termination of treatment’. The pilot test taught us that patients referred to a brought spectrum of physical training and rehabilitation activities when answering this item. By an introductory question patients were asked to skip this section if their cancer surgery, chemotherapy or radiotherapy had not been completed. This resulted in a lower number of responders and may have weakened the power. This paper aimed to study situations where individuals to some degree had not received the help they needed. Although it may have meant some data reduction, it was therefore initially decided to analyse the outcomes following dichotomisation.
Having unmet needs assumes that problems above a certain level had occurred. Different levels of unmet needs may be explained by the care given, as well as different levels of problems, interests, expectations to healthcare professionals and desire to be helped [Citation16]. However, evidence of a strong association between unmet needs and impaired quality of life suggests that patient-perceived unmet needs indicate the need for clinical attention [Citation17]. Furthermore, an Australian study has shown that having unmet needs was the strongest predictor of unmet needs six months later [Citation18]. Inequalities in ‘unmet needs’ therefore merit clinical as well as political attention. This survey aimed to analyse the patients’ perspective of the appropriateness of treatment and rehabilitation offers during the very early phase of cancer. It should be underlined that other study designs are needed to analyse the impact of early unmet needs and early interventions on later physical, practical and psychosocial problems [Citation19].
Comparison of levels of unmet needs across studies is limited by different assessment methods and samples. The number of problems and need items asked for is, e.g. essential for estimations of the proportion of patients with unmet needs of care. Items may not fully capture all needs, and a higher number of items increase the statistical probability of unmet needs. Furthermore, in some studies unmet needs are defined and analysed exclusively for patients reporting a problem in that specific area, which results in higher prevalences [Citation3,Citation4]. However, taking the many considerations into account the results from our study suggest that unmet needs are prevalent in the very beginning of the cancer trajectory, but at lower levels than reported from later phases [Citation3–4,Citation6,Citation20–22]. The results, therefore, support guideline recommendations of integration of cancer rehabilitation from the beginning – during diagnosis and start of treatment.
Due to the size and composition of the study sample, we were able to analyse predictors of unmet needs, i.e. variation across cancer types and sociodemographic groups. Male gender, low educational level and living alone generally increased the odds of unmet needs, which is in line with prior studies [Citation3–4,Citation10]. Men, patients with low educational level or living alone are not appropriately addressed during existing interventions. The results thus suggest that these groups need specific focus and interventions tailored to their specific needs. Preferences of men and patients with low educational level, i.e. an educational level well below levels of healthcare professionals and social workers, are important topics for future research.
The Danish healthcare system is primarily publicly funded and based on equal access to care, regardless of sociodemographic factors. Social inequalities have, however, been observed in a Danish study of 3439 mixed-site cancer patients in their second year of cancer [Citation23]. Living alone, being outside the workforce and low educational level increased the odds of unmet needs of rehabilitation. It was concluded that principles of equal access did not seem to be sufficient to avert social disparities. The present study suggests that sociodemographic inequalities are established from the very beginning of the cancer trajectory.
It is a common belief that breast cancer patients receive more attention and better offers than other diagnostic groups due to their relatively young age, being female, generally well-educated and socioeconomically advantaged. Our study showed that breast cancer decreased the odds of unmet needs when compared to the majority of cancer diagnoses. Existing rehabilitation programmes may be better suited to women with higher education, while the needs of other groups are to a lesser extent understood and met. Programmes for lower educated men may not exist, or current offers do not seem attractive. Diagnostic groups other than females with breast cancer may, thus, be more in need of resource allocation and attention from researchers studying new interventions [Citation24]. Consistent with previous studies, treatment with chemotherapy was associated with higher odds of unmet needs [Citation3,Citation21]. Physical rehabilitation and talking to other patients may be helpful in coping with the many side effects and intensive treatment periods, but current support seems inadequate to meet patient expectations. The evidence of the benefit of physical training to cancer patients is growing [Citation25]. The physical surroundings may, however, partly explain the apparent inappropriateness of physical training offered during chemotherapy. Furthermore, themes regarded of even higher priority to patients and treatment quality may have filled the consultations [Citation26].
Conclusion
This study showed that although rehabilitation is increasingly in focus in cancer programmes, unmet needs are frequent during the early cancer trajectory, and sociodemographic and clinical inequalities exist. Male gender, low educational level, not living with a partner, and treatment with chemotherapy are indicators of unmet needs. Special support from healthcare professionals and social workers, i.e. interventions tailored to these vulnerable groups during early cancer treatment, may help counterbalance social and clinical inequalities in the long run.
Acknowledgements
The authors wish to thank all patients for participating in the study, and all patients, clinicians and researchers for contribution to study design and development of the patient questionnaire. Furthermore, we wish to thank the Research Unit of General Practice, Aarhus University, for identification of study participants, data handling and analyses of selection. We also wish to thank Lise Stark for proof-reading the manuscript. The survey ‘The Experience of Cancer Patients during Diagnosis and Treatment, The Danish Cancer Society, 2011’ was funded by the Danish Cancer Society. The National Research Center of Cancer Rehabilitation is funded by the Danish Cancer Society.
Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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