Is implementing screening for distress an efficient means to recruit patients to a psychological intervention trial?

OBJECTIVES: Psychological interventions show greater efficacy when evaluated with distressed patients. We report on the feasibility of implementing screening for recruiting distressed cancer patients to a randomized controlled trial of problem-solving therapy (PST), characteristics associated with enrolment, and time investment and challenges of implementing screening. METHODS: Three medical settings implemented screening of patients, directly after cancer treatment (T1) and 2 months later (T2), using Hopkins Symptom Checklist-25 and one question about need for services. Distressed patients indicating need for services were interviewed. Eligible patients were offered the possibility to participate in the trial. Consenting patients were randomized to PST or waitlist. RESULTS: At T1, 366 of 970 screened patients (37%) scored above the cutoff and at T2, 208 of 689 screened patients (30%). At either or both T1 and T2, 423 patients reported distress, of whom 215 indicated need for services. Only 36 (4% of 970) patients consented to trial participation. Twenty-seven patients needed to be screened to recruit a single patient, with 17 h required for each patient recruited. Barriers to screening were time constraints and negative attitudes of oncology staff towards screening. CONCLUSIONS: Implementing screening proved inefficient for recruiting distressed cancer patients post-treatment to a randomized controlled trial on PST, with need for services being much less than anticipated. Consecutively screening patients did not result in a sample representative of the larger pool of distressed patients, which may lower generalizability. An adequately powered intervention trial using screening requires a feasibility study establishing recruitment rates and dedicated, funded staff assistance.

Effects of a group-based exercise and educational program on physical performance and disease self-management in rheumatoid arthritis: a randomized controlled study.

BACKGROUND: Evidence supports the use of educational and physical training programs for people with rheumatoid arthritis (RA). OBJECTIVE: The purpose of this study was to evaluate the effects of a group-based exercise and educational program on the physical performance and disease self-management of people with RA. DESIGN: This was a randomized controlled trial. SETTING: The study was conducted at a rehabilitation center in the Netherlands. PARTICIPANTS: Thirty-four people diagnosed with RA participated in the study. Participants were randomly assigned to either an intervention group (n=19) or a waiting list control group (n=15). INTERVENTION: The intervention in this study was an 8-week, multidisciplinary, group therapy program for people with RA, consisting of physical exercise designed to increase aerobic capacity and muscle strength (force-generating capacity) together with an educational program to improve health status and self-efficacy for disease-self-management. MEASUREMENTS: The main outcome measures were maximum oxygen uptake (Vo(2)max), muscle strength of the elbow and knee flexors and extensors, health status, and perceived self-efficacy. All data were recorded before intervention in week 1, after intervention in week 9, and at follow-up in week 22. RESULTS: The intervention group showed significant improvement (12.1%) in Vo(2)max at week 9 compared with the control group (-1.7%). Although significant within-group changes were found over time for muscle strength of the upper and lower extremities and health status that favored the intervention group, no between-group changes were found regarding these outcomes. LIMITATIONS: An important limitation was the small number of participants included in our study, which may have resulted in a lack of power. CONCLUSIONS: The present group-based exercise and educational program for people with RA had a beneficial effect on aerobic capacity but not on muscle strength, health status, or self-efficacy.

Does screening for distress efficiently uncover meetable unmet needs in cancer patients?

OBJECTIVES: We evaluated screening for distress in terms of its ability to uncover unmet need for psychosocial services in cancer patients. Correlates of distress, need for services and met and unmet need for services were investigated. METHODS: Immediately after cancer treatment (T1) and 2 months later (T2), 302 patients completed the Hopkins Symptom Checklist-25 (HSCL-25) and a single question assessing the need for services. All distressed patients (HSCL-25≥39) and non-distressed patients endorsing a need for services were then called (n = 99) to assess their need. RESULTS: Thirty-seven percent (T1) and 31% (T2) of patients were distressed and 31% (T1) and 18% (T2) expressed the need for services. Both time points showed higher distress in younger patients and females and lower distress in prostate cancer and patients treated by radiotherapy only. Less need for services was found in prostate cancer (T1), greater need was related to being single (T1) and younger (T2). Distress and need for services were positively related (p<0.001). The HSCL-25 showed modest sensitivity (T1: 0.59, T2: 0.65) and specificity (T1: 0.75, T2: 0.78) as an indicator of need for services. Interviews at T2 revealed that 51% of distressed patients needed no psychosocial services and 25% were already receiving services. At T2, regardless of distress level, 10% of all screened patients reported an unmet need for psychosocial services. CONCLUSIONS: Depending on the clinical context, screening might be more efficient if it assessed the unmet need for services rather than distress. More attention should be concentrated on directing patients with meetable unmet needs to available services.

The main problems of parents of a child with epidermolysis bullosa.

Epidermolysis Bullosa (EB) is a rare genetic blistering-skin disorder with varying degrees of severity, ranging from mild forms to severe forms, with chronic progression. The aim of this study was to identify and specify the problems of parents of a child with EB. Qualitative research methodology was used, comprising a series of semistructured interviews with eleven families. The key problems of parents were broken down into three themes, related to the child, the family, and the care providers. These themes comprised nine categories, including (1) the child being different, (2) the child suffering pain, (3) feelings of uncertainty, (4) restrictions on employment and leisure time, (5) difficulties in organization of care, (6) never being off-duty, (7) family problems, (8) ignorance and lack of skills of care providers, and (9) resistance to difficult care. Despite the great variance in clinical pictures of the different (sub)types of EB, the main problems parents experienced appear quite similar. However, the problems did appear to differ in extensiveness, intensity, and gravity.

Main problems experienced by children with epidermolysis bullosa: a qualitative study with semi-structured interviews.

The objective of this study was to identify and specify the problems of children with epidermolysis bullosa. The questions explored were: (i) What do children with epidermolysis bullosa experience as the most difficult problems; (ii) What is the impact of these problems on their daily life; and (iii) Do these experiences differ between mildly and severely affected children? Qualitative research methodology was used, comprising a series of semi-structured interviews with children with different (sub)types of epidermolysis bullosa. The interviews were analysed systematically with help of the qualitative software package Atlas-ti. Five main themes were found: (i) having an itchy skin, (ii) being in pain, (iii) having difficulties with participation, (iv) lack of understanding of others, and (v) the feeling of being different. Severely affected children suffered most from itch and treatment-related pain. Mildly affected children had more problems with activity-related pain. Mildly affected children also had more concerns about their appearance and the teasing and staring of others than did severely affected children. Both groups had difficulties with participation, the visibility of their disease and the feeling of being different.