A structured expressive writing activity targeting body image-related distress among head and neck cancer survivors: who do we reach and what are the effects?

PURPOSE: The aim of this pretest-posttest study was to investigate the reach and effects of My Changed Body (MyCB), an expressive writing activity based on self-compassion, among head and neck cancer (HNC) survivors. METHODS: This pilot study had a pretest-posttest design. HNC survivors received an invitation to complete a baseline survey on body image-related distress. At the end of the survey, HNC survivors were asked if they were interested in the intervention study. This entailed the writing activity and a survey 1 week and 1 month post-intervention. The reach was calculated by dividing the number of participants in the intervention study, by the number of (1) eligible HNC survivors and (2) those who filled in the baseline survey. Linear mixed models were used to analyze the effect on body image-related distress. Logistic regression analysis was used to investigate factors associated with the reach and reduced body image-related distress. MyCB was evaluated using study-specific questions. RESULTS: The reach of MyCB was 15-33% (depending on reference group) and was associated with lower education level, more social eating problems, and fewer wound healing problems. Among the 87 participants, 9 (10%) showed a clinically relevant improvement in body image-related distress. No significant effect on body image-related distress was found. Self-compassion improved significantly during follow-up until 1 month post-intervention (p=0.003). Users rated satisfaction with MyCB as 7.2/10. CONCLUSION: MyCB does not significantly improve body image-related distress, but is likely to increase self-compassion, which sustains for at least 1 month.

Body changes after cancer: female cancer patients' perceived social support and their perspective on care.

PURPOSE: The aim of this study was to investigate among female cancer patients their perceived social support from health care professionals (HCPs), family and friends, and public media, and their perspective on care concerning body changes. METHODS: A study-specific questionnaire was completed by 235 female cancer patients. Descriptive statistics were used to describe social support and perspective on care. Logistic regression analyses were used to investigate the associations between social support and sociodemographic and clinical factors, psychosocial impact, and importance of appearance. RESULTS: More than half of the patients received sufficient support from HCPs (54%) and family and friends (55%), and a third from the media (32%). Higher educated patients and those who found appearance not important during illness perceived lower support from HCPs. Patients without a partner, and those with a surgical treatment only, perceived lower support from family and friends. Patients who were older, higher educated, without a partner, and those who found appearance not important during illness perceived lower support from the media. In total, 15-50% of the patients received sufficient care for different domains of body changes. Patients expressed the highest need for psychological support (28%) and nutrition (28%). CONCLUSIONS: Half of the female cancer patients reported to receive sufficient social support concerning body changes after cancer. Perceived support depended on age, education, relationship status, and treatment modality. The need for more care was moderate.

Adoption and implementation of a web-based self-management application "Oncokompas" in routine cancer care: a national pilot study.

PURPOSE: A web-based self-management application "Oncokompas" was developed to monitor health-related quality of life and to support cancer survivors in finding and obtaining optimal supportive care. Access to this application is provided via a healthcare professional (HCP). The aim of this study was to explore the adoption and implementation of Oncokompas in routine clinical practice and to obtain insights in potentially relevant determinants of implementation. METHODS: A pilot study was carried out among 65 hospitals throughout The Netherlands. HCPs filled out a questionnaire on the implementation of Oncokompas in their organization, consisting of study specific items and items based on the Measurement Instrument for Determinants of Innovations (MIDI). The MIDI comprises 29 determinants in four domains that predict the use of innovations: the innovation itself (Oncokompas), the user (HCP), the organization (hospital), and socio-political context. RESULTS: In total, 20/65 eligible hospitals agreed to implement Oncokompas (adoption rate 31%). In these 20 adopting hospitals, the majority of the responding HCPs (72/205) in this study (44/61) indicated their patients were offered access to Oncokompas (implementation rate 72%). Comparing those HCPs who did and did not implement Oncokompas, the groups differed significantly on innovation-related (procedural clarity, complexity) and user-related determinants (importance of outcome expectations, professional obligation, social support, and self-efficacy). CONCLUSIONS: During this 1-year study, nationwide adoption rate of Oncokompas was at 31%, and subsequent implementation rate was at 72%. The results of this study contribute to further optimize interventions and strategies to adopt and implement (online) self-management applications in cancer care.

'Oncokompas', a web-based self-management application to support patient activation and optimal supportive care: a feasibility study among breast cancer survivors.

BACKGROUND: Cancer survivors have to deal with symptoms related to cancer and its treatment. In Oncokompas, cancer survivors monitor their quality of life by completing patient reported outcome measures (PROMs), followed by personalized feedback, self-care advice, and supportive care options to stimulate patient activation. The aim of this study was to investigate feasibility and pretest-posttest differences of Oncokompas including a newly developed breast cancer (BC) module among BC survivors. MATERIAL AND METHODS: A pretest-posttest design was used. Feasibility was investigated by means of adoption, usage, and satisfaction rates. Several socio-demographic and clinical factors, and health-related quality of life (HRQOL) were explored that might be associated with patient satisfaction. Barriers and facilitators of Oncokompas feasibility were investigated by evaluating nurse consultation reports. Differences in patient activation (Patient Activation Measure) and patient-physician interaction (Perceived Efficacy in Patient-Physician Interactions) before and after Oncokompas use were investigated. RESULTS: In total, 101 BC survivors participated. Oncokompas had an adoption rate of 75%, a usage rate of 75-84%, a mean satisfaction score of 6.9 (range 0-10) and a Net Promoter Score (NPS) of -36 (range -100-100) (N = 68). The BC module had a mean satisfaction score of 7.6. BC survivors who received surgery including chemotherapy and/or radiotherapy were significantly more satisfied with Oncokompas than BC survivors with surgery alone (p = .013). Six facilitators and 10 barriers of Oncokompas feasibility were identified. After using Oncokompas, BC survivors scored significantly higher on patient activation (p = .007; r = .24), but not on patient-physician interaction (p = .75). CONCLUSION: Oncokompas including a BC module is considered feasible, but needs further optimization to increase user satisfaction. This study shows the value of tailoring eHealth applications for cancer survivors to their specific tumor type. Oncokompas including the BC module seems to improve patient activation among BC survivors.

A systematic review of the measurement properties of the Body Image Scale (BIS) in cancer patients.

INTRODUCTION: Body image is acknowledged as an important aspect of health-related quality of life in cancer patients. The Body Image Scale (BIS) is a patient-reported outcome measure (PROM) to evaluate body image in cancer patients. The aim of this study was to systematically review measurement properties of the BIS among cancer patients. METHODS: A search in Embase, MEDLINE, PsycINFO, and Web of Science was performed to identify studies that investigated measurement properties of the BIS (Prospero ID 42017057237). Study quality was assessed (excellent, good, fair, poor), and data were extracted and analyzed according to the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology on structural validity, internal consistency, reliability, measurement error, hypothesis testing for construct validity, and responsiveness. Evidence was categorized into sufficient, insufficient, inconsistent, or indeterminate. RESULTS: Nine studies were included. Evidence was sufficient for structural validity (one factor solution), internal consistency (α = 0.86-0.96), and reliability (r > 0.70); indeterminate for measurement error (information on minimal important change lacked) and responsiveness (increasing body image disturbance in only one study); and inconsistent for hypothesis testing (conflicting results). Quality of the evidence was moderate to low. No studies reported on cross-cultural validity. CONCLUSION: The BIS is a PROM with good structural validity, internal consistency, and test-retest reliability, but good quality studies on the other measurement properties are needed to optimize evidence. It is recommended to include a wider variety of cancer diagnoses and treatment modalities in these future studies.

A guided self-help intervention targeting psychological distress among head and neck cancer and lung cancer patients: motivation to start, experiences and perceived outcomes.

BACKGROUND: Recent results of a randomized clinical trial showed that a guided self-help intervention (based on problem-solving therapy) targeting psychological distress among head and neck cancer and lung cancer patients is effective. This study qualitatively explored motivation to start, experiences with and perceived outcomes of this intervention. METHODS: Data were collected from semi-structured interviews of 16 patients. All interviews were audio-recorded and transcribed verbatim. Data were analyzed individually by two coders and coded into key issues and themes. RESULTS: Patients participated in the intervention for intrinsic (e.g. to help oneself) and for extrinsic reasons (e.g. being asked by a care professional or to help improve health care). Participants indicated positive and negative experiences with the intervention. Several participants appreciated participating as being a pleasant way to work on oneself, while others described participating as too confrontational. Some expressed their disappointment as they felt the intervention had brought them nothing or indicated that they felt worse temporarily, but most participants perceived positive outcomes of the intervention (e.g. feeling less distressed and having learned what matters in life). CONCLUSIONS: Cancer patients have various reasons to start a guided self-help intervention. Participants appreciated the guided self-help as intervention to address psychological distress, but there were also concerns. Most participants reported the intervention to be beneficial. The results suggest the need to identify patients who might benefit most from guided self-help targeting psychological distress and that interventions should be further tailored to individual cancer patients' requirements.

Development of a web-based patient decision aid for initiating disease modifying anti-rheumatic drugs using user-centred design methods.

BACKGROUND: A main element of patient-centred care, Patient Decision Aids (PtDAs) facilitate shared decision-making (SDM). A recent update of the International Patient Decision Aids Standards (IPDAS) emphasised patient involvement during PtDA development, but omitted a methodology for doing so. This article reports on the value of user-centred design (UCD) methods for the development of a PtDA that aims to support inflammatory arthritis patients in their choice between disease modifying anti-rheumatic drugs (DMARDs). METHODS: The IPDAS development process model in combination with UCD methods were applied. The process was overseen by an eight-member multidisciplinary steering group. Patients and health professionals were iteratively consulted. Qualitative in-depth interviews combined with rapid prototyping were conducted with patients to assess their needs for specific functionality, content and design of the PtDA. Group meetings with health professionals were organized to assess patients' needs and to determine how the PtDA should be integrated into patient pathways. The current literature was reviewed to determine the clinical evidence to include in the PtDA. To evaluate usability among patients, they were observed using the PtDA while thinking aloud and then interviewed. RESULTS: The combination of patient interviews with rapid prototyping revealed that patients wanted to compare multiple DMARDs both for their clinical aspects and implications for daily life. Health professionals mainly wanted to refer patients to a reliable, easily adjustable source of information about DMARDs. A web-based PtDA was constructed consisting of four parts: 1) general information about SDM, inflammatory arthritis and DMARDs; 2) an application to compare particular DMARDs; 3) value clarification exercises; and 4) a printed summary of patients' notes, preferences, worries and questions that they could bring to discuss with their rheumatologist. CONCLUSIONS: The study demonstrated that UCD methods can be of great value for the development of PtDAs. The early, iterative involvement of patients and health professionals was helpful in developing a novel user-friendly PtDA that allowed patients to choose between DMARDs. The PtDA fits the values of all stakeholders and easily integrates with the patient pathway and daily workflow of health professionals. This collaborative designed PtDA may improve SDM and patient participation in arthritis care.

Interventions that support novice nurses' transition into practice: A realist review.

BACKGROUND: Many transition-to-practice programs have been developed to support novice nurses during their first years into practice. These programs report improvements in retention, wellbeing and clinical competence, but the driving mechanisms of these interventions remain largely unclear. OBJECTIVE: To identify how transition-to-practice programs for novice nurses work and in what contexts they work successfully. METHODS: A realist review was conducted. Eligibility criteria included intervention studies aimed at novice nurses in their first two years of practice that reported outcomes on organizational or individual nurse level. The underlying theory of included transition-to-practice programs was extracted, and relevant contextual factors, mechanisms and outcomes were explored and synthesized into context-mechanism-outcome (CMO) configurations. The search was limited to studies between 2000 and 2023. RESULTS: A total of 32 studies were included, evaluating 30 different transition-to-practice programs with a wide range of intervention components including stress management, clinical education, professional and peer support, and ward rotations. Transition-to-practice programs were often designed without a theoretical foundation. Driving mechanisms behind the programs pertained to psychological, professional, and social development. Contextual factors that activated the mechanisms were enabling conditions for mentors and novice nurses, selection and motivation of novice nurses and organizational culture. CONCLUSIONS: Current transition-to-practice programs primarily focus on the individual and professional development of nurses. However, transition to practice can benefit from a systemic approach that includes development initiatives on the organizational level. REGISTRATION: PROSPERO ID CRD42021268080, August 15, 2021. TWEETABLE ABSTRACT: Context and mechanisms determine successful implementation of transition to practice programs for novice nurses. @transitiontopractice @nurseworkforce.

Effect of Stepped Care on Sexual Interest and Enjoyment in Distressed Patients with Head and Neck Cancer: A Randomized Controlled Trial.

INTRODUCTION: A recent randomized controlled trial (RCT) in patients with head and neck cancer (HNC) with psychological distress showed that a stepped care (SC) program targeting psychological distress compared with care as usual (CAU), is (cost)effective in reducing psychological distress. AIM: The aim of the present study was to investigate whether SC can coalleviate problems with sexual interest and enjoyment. A secondary aim was to investigate whether the presence of an unmet sexual health need and having a psychiatric disorder (depression or anxiety) at baseline moderated any effect of SC on these sexual variables until 1-year follow-up. METHODS: HNC survivors (N = 134), randomized to SC or CAU, were assessed regarding their sexual interest and enjoyment before and after the intervention and at 3, 6, 9, and 12 months follow-up. Linear mixed models were used to evaluate differences in the course of sexual interest and enjoyment between SC and CAU. MAIN OUTCOME MEASURE: The "sexuality" symptom subscale, part of the European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire, Head and Neck Cancer-specific module. RESULTS: Of all patients, 76.1% had an unmet sexual need at baseline, 24.6% had a psychiatric disorder (anxiety or depression). SC did not reduce problems with sexual interest and enjoyment at any of the follow-up measurements compared with CAU (P = .85). This was neither moderated by an unmet sexual health need at baseline (P = .64) nor by the presence of a psychiatric disorder at baseline (P = .59). CONCLUSION: A substantial number of patients with HNC have unmet sexual health needs. SC targeting psychological distress does not reduce problems with sexuality in these patients. Interventions specifically targeting sexuality are recommended. Schutte LER, Melissant HC, Jansen F, et al. Effect of Stepped Care on Sexual Interest and Enjoyment in Distressed Patients with Head and Neck Cancer: A Randomized Controlled Trial. Sex Med 2021;9:100304.

Associations between testosterone and patient reported sexual outcomes among male and female head and neck cancer patients before and six months after treatment: A pilot study.

OBJECTIVES: To investigate associations between testosterone and patient reported sexual problems and need for sexual care in head and neck cancer patients at time of diagnosis and 6 months after treatment. PATIENTS AND METHODS: Data and samples were used of 40 patients (20 men, 20 women) before and 6 months after treatment. Outcome measures were total testosterone level (TT) and free testosterone index (FTI), testosterone insufficiency (TI), the EORTC QLQ-HN35 Sexuality subscale, the subscales of the International Index of Erectile Function (IIEF), Female Sexual Function Index (FSFI), and the Sexuality subscale of the Short-Form Supportive Care Needs Survey (SCNS-SF34). RESULTS: In men, higher FTI before treatment was significantly associated with better IIEF Orgasm (p = 0.020) and at 6 months follow-up with IIEF Desire (p = 0.019). Before treatment, insufficient testosterone was present in 5 males (25%) and in 3 at follow-up (15%) (2 patients who had TI before treatment plus one). In women, higher TT at follow-up was significantly associated with better EORTC Sexuality (p = 0.031) and FSFI Satisfaction (p = 0.020); FTI at follow-up was associated with FSFI Satisfaction (p = 0.012). Before treatment, TI was present in 2 women (10%) and in 3 (15%) at follow-up (the same 2 patients plus one). CONCLUSION: This pilot study showed that testosterone seems to be associated with patient reported sexual outcomes among male and female head and neck cancer patients. It is estimated that 10-25% of HNC patients may have testosterone insufficiency before treatment and/or at 6 months after treatment.