Melissa S. Y. Thong

Illness perceptions in dialysis patients and their association with quality of life

The present study explored illness perceptions of end stage renal disease (ESRD) patients on both haemodialysis (HD) and peritoneal dialysis (PD) treatment, and their associations with quality of life. Leventhals self-regulation model (SRM) was used as a theoretical framework. Illness perceptions and quality of life were assessed with the IPQ-R and the SF-36 in 91 HD and 42 PD patients participating in the NECOSAD-study. Compared to HD patients, PD patients experienced more personal control and had a better understanding of the illness. Illness perceptions explained from 17 to 51% of the variance in quality of life scores. Perception of more symptoms, more consequences and lower personal control were associated with lower well-being. The concept of illness perceptions is useful in understanding the impact of ESRD and of dialysis treatment on quality of life. Interventions aimed at providing more knowledge about ESRD and dialysis, and provision of skills to coping with the illness and its consequences may improve quality of life in dialysis patients.

Long-term cancer survivors experience work changes after diagnosis: Results of a population-based study.

Background: Although cancer survivorship is increasing with improved diagnosis and treatments, few studies have explored employment changes and the factors related to this change among cancer survivors. Therefore, we aim to explore the prevalence of employment problems in long‐term cancer survivors. In addition, we explored what patient or tumour characteristics predicted employment changes.

Association between a self-rated health question and mortality in young and old dialysis patients: a cohort study

BACKGROUNDnSelf-rated health (SRH) has been shown to predict mortality in large community-based studies; however, large clinical-based studies of this topic are rare. We assessed whether an SRH item predicts mortality in a large sample of incident dialysis patients beyond sociodemographic, disease, and clinical measures and possible age interaction.nnnSTUDY DESIGNnProspective cohort study.nnnSETTING & PARTICIPANTSn1,443 predominantly white patients from 38 dialysis centers in The Netherlands participating in the Netherlands Cooperative Study on the Adequacy of Dialysis-2 between 1997 and 2004.nnnPREDICTORnSRH score completed at 3 months after the start of dialysis therapy (baseline).nnnOUTCOMES & MEASUREMENTSnCox proportional hazards model estimated the association between SRH and all-cause mortality. Interaction of SRH with age (<65 and >/=65 years) was examined in an additive model.nnnRESULTSnMean age of patients was 59.6 +/- 14.8 years, with 61% men and 69% married/living together. Mean follow-up was 2.7 +/- 1.8 years. Deaths per SRH group in the multivariate analyses sample: excellent/very good (9 of 63 patients; 14.3%), good (148 of 473 patients; 31.3%), fair (194 of 508 patients; 38.2%), and poor (45 of 71 patients; 63.4%). Patients with poor, fair, or good health ratings had a greater mortality risk than those with excellent/very good health ratings (adjusted hazard ratio [HR(adj)], 3.56; 95% confidence interval [CI], 1.71 to 7.42; HR(adj), 2.09; 95% CI, 1.06 to 4.12; HR(adj), 1.87; 95% CI, 0.95 to 3.70, respectively) independent of a range of risk factors. No age interaction with SRH was found.nnnLIMITATIONSnAlthough the SRH-mortality association remained strong despite extensive adjustments, unknown residual confounding could still exist.nnnCONCLUSIONnSRH is an independent predictor of mortality in incident dialysis patients. Patients with poor SRH in both age strata had a significantly increased risk of mortality even after controlling for demographic and clinical confounders. Patient self-assessment of health can be an invaluable and economical complement to clinical measures in risk assessment.

Behavioural research in patients with end-stage renal disease : A review and research agenda

OBJECTIVEnTo suggest a behavioural research agenda for patients with end-stage renal disease (ESRD) based on a concise review of seven stages of psychosocial research, a literature review, and current behavioural research in other chronic somatic diseases.nnnMETHODSnHistorical behavioural ESRD research was classified. The specialized register of the Cochrane Behavioral Medicine Field was also checked, and additional papers were selected by screening reference lists and related behavioural science journals, to identify promising areas for future research.nnnRESULTSnThe top-five topics identified via the literature search pertain to (1) psychological aspects and interventions, (2) adaptation, coping, and depression, (3) exercise, (4) counseling and education, and (5) compliance. Illness and treatment beliefs, sexuality, suicide, family support, and self-management interventions, were identified on the basis of research in other chronic illnesses as topics for future research. Regarding theory, the Common-Sense Model (CSM) was judged to offer useful theoretical perspectives; regarding methods, qualitative methods can be a valuable addition to quantitative research methods.nnnCONCLUSIONnIllness beliefs, treatment beliefs, and self-management behaviours are promising concepts in the assessment and clinical care of ESRD-patients. Cognitive-behavioural treatments appear to have potential and should be specified and elaborated for specific categories and problems of ESRD-patients.nnnPRACTICE IMPLICATIONSnThis research agenda is in line with moves towards patient-centred disease-management to improve the quality of medical care for ESRD-patients.

Patients’ representations of their end-stage renal disease: relation with mortality

BACKGROUNDnSelf-regulation theory explains how patients illness perceptions influence self-management behaviour (e.g. via adherence to treatment). Following these assumptions, we explored whether illness perceptions of ESRD-patients are related to mortality rates.nnnMETHODSnIllness perceptions of 182 patients participating in the NECOSAD-2 study in the period between December 2004 and June 2005 were assessed. Cox proportional hazard models were used to estimate whether subsequent all-cause mortality could be attributed to illness perception dimensions.nnnRESULTSnOne-third of the participants had died at the end of the follow-up. Mortality rates were higher among patients who believed that their treatment was less effective in controlling their disease (perceived treatment control; RR = 0.71, P = 0.028). This effect remained stable after adjusting for sociodemographic and clinical variables (RR = 0.65, P = 0.015).nnnCONCLUSIONSnIf we consider risk factors for mortality, we tend to rely on clinical parameters rather than on patients representations of their illness. Nevertheless, results from the current exploration may suggest that addressing patients personal beliefs regarding the effectiveness of treatment can provide a powerful tool for predicting and perhaps even enhancing survival.

Prostate cancer survivors who would be eligible for active surveillance but were either treated with radiotherapy or managed expectantly: comparisons on long-term quality of life and symptom burden

Study Type – Therapy (outcomes research)u2028Level of Evidenceu20032c

Response rates for patient-reported outcomes using web-based versus paper questionnaires: comparison of two invitational methods in older colorectal cancer patients.

Background Improving questionnaire response rates is an everlasting issue for research. Today, the Internet can easily be used to collect data quickly. However, collecting data on the Internet can lead to biased samples because not everyone is able to access or use the Internet. The older population, for example, is much less likely to use the Internet. The Patient-Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship (PROFILES) registry offers a platform to collect Web-based and paper questionnaires and to try different measures to improve response rates. Objective In this study, our aim was to study the influence of two methods of invitation on the response rate. Our second aim was to examine the preference of questionnaire mode of administration (paper or Web-based) for the older patient in particular. Methods To test these two invitational methods, 3406 colorectal cancer patients between ages 18 and 85 years received an invitation containing an access code for the Web-based questionnaire. They could also request a paper questionnaire with an included reply card (paper-optional group). In contrast, 179 randomly selected colorectal cancer patients received a paper questionnaire with the invitation (paper-included group). They could also choose to fill out the Web-based questionnaire with the included access code. Results Response rates did not differ between the paper-optional and the paper-included groups (73.14%, 2491/3406 and 74.9%, 134/179, P=.57). In the paper-optional group, online response was significantly higher when compared to the paper-included group (41.23%, 1027/2491 vs 12.7%, 17/134, P<.001). The majority of online respondents responded after the first invitation (95.33%, 979/1027), which was significantly higher than the paper respondents (52.19%, 764/1464, P<.001). Respondents aged 70 years and older chose to fill out a paper questionnaire more often (71.0%, 677/954). In the oldest age group (≥80 years), 18.2% (61/336) of the respondents filled out a Web-based questionnaire. Conclusions The lack of difference in response rates between invitation modes implies that researchers can leave out a paper questionnaire at invitation without lowering response rates. It may be preferable not to include a paper questionnaire because more respondents then will fill out a Web-based questionnaire, which will lead to faster available data. However, due to respondent preference, it is not likely that paper questionnaires can be left out completely in the near future.

Biological pathways, candidate genes, and molecular markers associated with quality-of-life domains: an update

Background There is compelling evidence of a genetic foundation of patient-reported quality of life (QOL). Given the rapid development of substantial scientific advances in this area of research, the current paper updates and extends reviews published in 2010.ObjectivesThe objective was to provide an updated overview of the biological pathways, candidate genes, and molecular markers involved in fatigue, pain, negative (depressed mood) and positive (well-being/happiness) emotional functioning, social functioning, and overall QOL.MethodsWe followed a purposeful search algorithm of existing literature to capture empirical papers investigating the relationship between biological pathways and molecular markers and the identified QOL domains.ResultsMultiple major pathways are involved in each QOL domain. The inflammatory pathway has the strongest evidence as a controlling mechanism underlying fatigue. Inflammation and neurotransmission are key processes involved in pain perception, and the catechol-O-methyltransferase (COMT) gene is associated with multiple sorts of pain. The neurotransmitter and neuroplasticity theories have the strongest evidence for their relationship with depression. Oxytocin-related genes and genes involved in the serotonergic and dopaminergic pathways play a role in social functioning. Inflammatory pathways, via cytokines, also play an important role in overall QOL.ConclusionsWhereas the current findings need future experiments and replication efforts, they will provide researchers supportive background information when embarking on studies relating candidate genes and/or molecular markers to QOL domains. The ultimate goal of this area of research is to enhance patients’ QOL.

The impact of disease progression on perceived health status and quality of life of long-term cancer survivors

IntroductionThe number of cancer survivors experiencing disease progression (DP) is increasing with the number of cancer survivors. However, little is known whether DP affects health-related quality of life (HRQL) of long-term cancer survivors. We aimed therefore to compare the health status (HS) and HRQL of DP and disease-free (DF) survivors up to 15xa0years after initial diagnosis.Methods232 cancer survivors with DP identified through the Eindhoven Cancer Registry were matched with 232 DF survivors of similar demographic and clinical characteristics. Patients completed generic HS (SF-36) and cancer-specific HRQL (QOL-CS) questionnaires 5–15xa0years after diagnosis.ResultsCompared with DF survivors, DP survivors exhibited significantly lower scores on all SF-36 and QOL-CS (except spiritual well-being) dimensions. DF survivors had better scores than the normative population on all SF-36 dimensions. Among survivors with DP, those with short survival (<5xa0years) had significantly poorer HS scores on all dimensions except bodily pain compared with the normative population. Comparatively, the long survival (≥5xa0years) DP group had better HRQL than the short DP group but poorer HRQL than the normative population. In multivariate analyses, DP and DF survival time were independently associated with aspects of HS and HRQL in cancer survivors.Discussions/ConclusionsDP cancer survivors have poorer long-term HS and HRQL compared with DF survivors. However, there is suggestion that HS and HRQL does improve over time following DP.Implication for Cancer SurvivorsAlthough DP survivors report poorer long-term HRQL compared with DF cancer survivors, results suggest that time can attenuate the distress of DP on HRQL. Psycho-educational programs could help to increase patients’ sense of empowerment and personal control should DP occur.

Information provision and patient reported outcomes in patients with metastasized colorectal cancer: results from the PROFILES registry.

BACKGROUNDnPatients with metastasized colorectal cancer (mCRC) have different information needs compared with patients with nonmetastatic colorectal cancer (CRC). Appropriate information provision leads to better patient reported outcomes for patients with nonmetastatic disease.nnnOBJECTIVEnTo measure the perceived level of, and satisfaction with, information received by patients with mCRC as compared with those with nonmetastatic (stage I,II,III) CRC. Also, associations of information provision with health status, anxiety, depression, and illness perceptions were investigated.nnnMETHODSnA cross-sectional population-based survey was conducted. All CRC patients diagnosed between 2002 and 2007 according to the Eindhoven Cancer Registry (ECR) were selected. Response rate was 75% (n=1159, of which 139 had mCRC). Participants completed questionnaires on information provision (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-INFO25), health status (Short Form-36), anxiety and depression (Hospital Anxiety and Depression Scale [HADS]), and illness perceptions (Brief Illness Perception Questionnaire [B-IPQ]).nnnRESULTSnThe perceived receipt of information was quite comparable between CRC patients with and without mCRC. Only perceived receipt of treatment information was higher for patients with mCRC (45 versus 37; p<0.01). Sixty percent of the patients with mCRC were satisfied with the amount of received information and almost 30% wanted to receive more information. The perceived receipt of more disease information and information about other services was associated with worse health outcomes, whereas satisfaction with the received information was not associated with health outcomes.nnnCONCLUSIONnThe findings of this study indicate that some improvements can be made in the provision of information to patients with mCRC. Adequate assessment of information needs of mCRC patients, as well as appropriate responses to these needs by providing the information in an appropriate way could possibly lead to improvements in patient satisfaction.