Palliative Care Research: Successful Recruitment and Retention Strategies of Patient-Caregiver Dyads

Abstract Research shows that the well-being of patients with serious illness and their family caregivers is significantly associated. Thus, to build the scientific knowledge upon which to establish high quality palliative and end-of-life care practices for these patients and their caregivers, research studies should include successful recruitment and retention strategies that focus on the patient-caregiver dyad. Aims: To review the literature focusing on successful dyadic recruitment and retention strategies and to describe successful recruitment and retention strategies, and attrition in a longitudinal study of end-stage liver disease (ESLD) patient-caregiver dyads. Methods: A five-year prospective longitudinal study of dyads included quantitative and qualitative data collected at 5 time points over 1 year: at baseline, 3, 6, 9, and 12 months. Results: Over a 32-month period 336 dyads were approached and 241 were enrolled. The refusal rate was 27 dyads (8.0%). Over the course of the study, 31 patients or caregivers withdrew for various reasons (too sick, liver transplantation). The attrition due to death of patients was 53 dyads (20.2%). Successful strategies used for recruitment and retention included tailoring to provider preference for referral, accommodating patient preference for data collection method, and having predictable and ongoing contact between a specific study staff and dyads. Conclusions: Less than 10 studies address recruitment and retention strategies most effective in dyadic research in various serious illnesses and clinical settings. Recruitment of ESLD patient-caregiver dyads is challenging. Future longitudinal dyadic studies of serious illnesses and palliative care may benefit from strategies learned from the current ESLD study.

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Exposure to Bullying and General Psychopathology: A Prospective, Longitudinal Study

Research on Child and Adolescent Psychopathology ◽

10.1007/s10802-020-00760-2 ◽

2021 ◽

Author(s):

Jolien Rijlaarsdam ◽

Charlotte A. M. Cecil ◽

J. Marieke Buil ◽

Pol A. C. van Lier ◽

Edward D. Barker

Keyword(s):

Longitudinal Study ◽

Child Psychopathology ◽

Well Being ◽

Self Report ◽

General Factor ◽

Prospective Longitudinal Study ◽

General Psychopathology ◽

Parents And Children ◽

Prospective Longitudinal ◽

Internalizing And Externalizing

AbstractAlthough there is mounting evidence that the experience of being bullied associates with both internalizing and externalizing symptoms, it is not known yet whether the identified associations are specific to these symptoms, or shared between them. The primary focus of this study is to assess the prospective associations of bullying exposure with both general and specific (i.e., internalizing, externalizing) factors of psychopathology. This study included data from 6,210 children participating in the Avon Longitudinal Study of Parents and Children (ALSPAC). Child bullying was measured by self-report at ages 8 and 10 years. Child psychopathology symptoms were assessed by parent-interview, using the Development and Well-being Assessment (DAWBA) at ages 7 and 13 years. Bullying exposure significantly associated with the general psychopathology factor in early adolescence. In particular, chronically victimized youth exposed to multiple forms of bullying (i.e., both overt and relational) showed higher levels of general psychopathology. Bullying exposure also associated with both internalizing and externalizing factors from the correlated-factors model. However, the effect estimates for these factors decreased considerably in size and dropped to insignificant for the internalizing factor after extracting the shared variance that belongs to the general factor of psychopathology. Using an integrative longitudinal model, we found that higher levels of general psychopathology at age 7 also associated with bullying exposure at age 8 which, in turn, associated with general psychopathology at age 13 through its two-year continuity. Findings suggest that exposure to bullying is a risk factor for a more general vulnerability to psychopathology.

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Do biologic markers predict cardiovascular end points in diabetic end-stage renal disease? A prospective longitudinal study

Clinical Kidney Journal ◽

10.1093/ckj/sft116 ◽

2013 ◽

Vol 6 (6) ◽

pp. 599-603 ◽

Cited By ~ 2

Author(s):

G. P. Bayliss ◽

L. A. Weinrauch ◽

R. E. Gleason ◽

A. T. Lee ◽

J. A. D'Elia

Keyword(s):

Longitudinal Study ◽

Renal Disease ◽

End Stage Renal Disease ◽

End Points ◽

Prospective Longitudinal Study ◽

Biologic Markers ◽

Stage Renal Disease ◽

End Stage ◽

Prospective Longitudinal

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Palliative Sedation, Not Slow Euthanasia: A Prospective, Longitudinal Study of Sedation in Flemish Palliative Care Units

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2010.04.019 ◽

2011 ◽

Vol 41 (1) ◽

pp. 14-24 ◽

Cited By ~ 39

Author(s):

Patricia Claessens ◽

Johan Menten ◽

Paul Schotsmans ◽

Bert Broeckaert

Keyword(s):

Palliative Care ◽

Longitudinal Study ◽

Palliative Sedation ◽

Prospective Longitudinal Study ◽

Palliative Care Units ◽

Prospective Longitudinal

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Prevalence and predictors of poor sexual well-being over 5 years following treatment for colorectal cancer: results from the ColoREctal Wellbeing (CREW) prospective longitudinal study

BMJ Open ◽

10.1136/bmjopen-2020-038953 ◽

2020 ◽

Vol 10 (11) ◽

pp. e038953

Author(s):

Jane Frankland ◽

Sally Wheelwright ◽

Natalia V Permyakova ◽

David Wright ◽

Nicole Collaço ◽

...

Keyword(s):

Quality Of Life ◽

Colorectal Cancer ◽

Social Support ◽

Longitudinal Study ◽

Self Efficacy ◽

Well Being ◽

Prospective Longitudinal Study ◽

Adult Cancer Survivors ◽

Prospective Longitudinal

ObjectivesTo describe prevalence and predictors of poor sexual well-being for men and women over 5 years following treatment for colorectal cancer.DesignProspective longitudinal study, from presurgery to 5 years postsurgery, with eight assessment points. Logistic regression models predicted sexual well-being from presurgery to 24 months and 24 months to 60 months; time-adjusted then fully adjusted models were constructed at each stage.SettingTwenty-nine hospitals in the UK.ParticipantsPatients with Dukes’ stage A–C, treated with curative intent, aged ≥18 years and able to complete questionnaires were eligible.Outcome measuresThe dependent variable was the Quality of Life in Adult Cancer Survivors sexual function score. Independent variables included sociodemographic, clinical and psychosocial characteristics.ResultsSeven hundred and ninety participants provided a sexual well-being score for at least one time point. Thirty-seven per cent of men and 14% of women reported poor sexual well-being at 5 years. Baseline predictors for men at 24 months included having a stoma (OR 1.5, 95% CI 1.02 to 2.20) and high levels of depression (OR 2.69/2.01, 95% CI 1.68 to 4.32/1.12 to 3.61); men with high self-efficacy (OR confident 0.33/0.48, 95% CI 0.18 to 0.61/0.24 to 1.00; very confident 0.25/0.42, 95% CI 0.13 to 0.49/0.19 to 0.94) and social support (OR 0.52/0.56, 95% CI 0.33 to 0.81/0.35 to 0.91) were less likely to report poor sexual well-being. Predictors at 60 months included having a stoma (OR 2.30/2.67, 95% CI 1.22 to 4.34/1.11 to 6.40) and high levels of depression (OR 5.61/2.58, 95% CI 2.58 to 12.21/0.81 to 8.25); men with high self-efficacy (very confident 0.14, 95% CI 0.047 to 0.44), full social support (OR 0.26; 95% CI 0.13 to 0.53) and higher quality of life (OR 0.97, 95% CI 0.95 to 0.98) were less likely to report poor sexual well-being. It was not possible to construct models for women due to low numbers reporting poor sexual well-being.ConclusionsSeveral psychosocial variables were identified as predictors of poor sexual well-being among men. Interventions targeting low self-efficacy may be helpful. More research is needed to understand women’s sexual well-being.

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Interventions and symptom relief in hospital palliative cancer care: results from a prospective longitudinal study

Supportive Care in Cancer ◽

10.1007/s00520-021-06248-z ◽

2021 ◽

Author(s):

Morten Thronæs ◽

Erik Torbjørn Løhre ◽

Anne Kvikstad ◽

Elisabeth Brenne ◽

Robin Norvaag ◽

...

Keyword(s):

Palliative Care ◽

Cancer Therapy ◽

Symptom Relief ◽

Well Being ◽

Hospital Length ◽

Hospital Length Of Stay ◽

Incurable Cancer ◽

Prospective Longitudinal Study ◽

Opioid Dose ◽

Prospective Longitudinal

Abstract Purpose To study the use of interventions and symptom relief for adult patients with incurable cancer admitted to an acute palliative care unit providing integrated oncology and palliative care services. Methods All admissions during 1 year were assessed. The use of interventions was evaluated for all hospitalizations. Patients with assessments for worst and average pain intensity, tiredness, drowsiness, nausea, appetite, dyspnea, depression, anxiety, well-being, constipation, and sleep were evaluated for symptom development during hospitalization. Descriptive statistics was applied for the use of interventions and the paired sample t-test to compare symptom intensities (SIs). Results For 451 admissions, mean hospital length of stay was 7.0 days and mean patient age 69 years. More than one-third received systemic cancer therapy. Diagnostic imaging was performed in 66% of the hospitalizations, intravenous rehydration in 45%, 37% received antibiotics, and 39% were attended by the multidisciplinary team. At admission and at discharge, respectively, 55% and 44% received oral opioids and 27% and 45% subcutaneous opioids. For the majority, opioid dose was adjusted during hospitalization. Symptom registrations were available for 180 patients. Tiredness yielded the highest mean SI score (5.6, NRS 0–10) at admission and nausea the lowest (2.2). Significant reductions during hospitalization were reported for all assessed SIs (p ≤ 0.01). Patients receiving systemic cancer therapy reported symptom relief similar to those not on systemic cancer therapy. Conclusion Clinical practice and symptom relief during hospitalization were described. Symptom improvements were similar for oncological and palliative care patients.

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