What factors contribute to cancer survivors' self-management skills? A cross-sectional observational study.

PURPOSE: Many cancer survivors, facing the consequences of their disease and its treatment, have medical and supportive aftercare needs. However, limited knowledge exists regarding the relationship between support needs and survivors' self-management skills. The study aim is to explore factors contributing to cancer survivors' self-management skills. METHODS: A cross-sectional study was conducted among cancer survivors (n = 277) of two outpatient oncology clinics at a university hospital in the Netherlands. Patients with head and neck cancer (n = 55) who had received radiotherapy and cisplatin or cetuximab were included, as well as patients who had undergone hematopoietic stem cell transplantation (n = 222). The primary outcome was self-management skills, assessed using the Partners in Health Scale (PIH), which comprises two subscales: knowledge and coping (PIH-KC), and recognition and management of symptoms, and adherence to treatment (PIH-MSA). Secondary outcomes were quality of life (EORTC QLQ-C30), self-efficacy (SECD6), patient-centered care (CAPHS), and social support (HEIQ). Machine learning-based Random Forest models were employed to construct associative models. Feature Importance (FI) was used to express the contribution to the model. RESULTS: High emotional quality of life (FI = 33.1%), increased self-efficacy (FI = 22.2%), and greater social support (FI = 18.2%) were identified as key factors contributing to cancer survivors' self-management knowledge (PIH-KC). Furthermore, greater support from professionals (FI = 36.1%) and higher self-efficacy (FI = 18.2%) were found to benefit participants' recognition and management, and therapy adherence (PIH-MSA). CONCLUSIONS: A patient-centered relationship between nurses and cancer survivors is essential for therapy adherence and the management of aftercare needs. Training to provide this holistic self-management support is required.

Transition to adulthood of adolescents with profound intellectual and multiple disabilities: Content validation of the SGU-PIMD to support families.

BACKGROUND: For families with adolescent children, the transition to adulthood is usually challenging. This period may be extra demanding for families with a child with profound intellectual and multiple disabilities due to the child's strong and persistent support needs. To support these families during this phase and to facilitate the transition process of these adolescents, we adapted the Canadian skills for growing up (SGU) into the skills for growing up-profound intellectual and multiple disabilities (SGU-PIMD). The aim of this study is to determine its content validity. METHOD: A Delphi study with family members and healthcare professionals was conducted. RESULTS: Results showed good content validity. However, the Delphi panel suggested minor adjustments to improve relevance, comprehensibility and comprehensiveness. CONCLUSIONS: The current SGU-PIMD can be used in practice for supporting adolescents with profound intellectual and multiple disabilities. However, there are also recommendations for research into the feasibility and acceptability of the instrument.

Patient perceived needs and experiences of person-centered care in patients with inflammatory arthritis.

BACKGROUND: Health care is shifting toward a person-centered care (PCC) approach. For implementation of PCC, there may be a special role for nurse practitioners (NPs). PURPOSE: The aim of this study was to explore the patient-perceived levels of and needs for of PCC in inflammatory arthritis patients who visited the NP at the outpatient clinic of an academic hospital in the Netherlands. METHODS: A cross-sectional study was performed. Disease characteristics were inventoried from the patient records. Patients filled out the PCCoc/rheum instrument, an instrument to measure patient perceived PCC, and a questionnaire based on the 14 life areas of the Self-Management Web, extended with areas including pain, fatigue, and night's rest. Participants were asked which life areas caused problems, and whether these problems were discussed. Mean values were calculated for normally distributed data and medians for nonnormally distributed data. RESULTS: Most of the patients had well-controlled disease (86.1%). The mean score of the PCCoc/rheum was 55.3 (SD 8.1). Patients experienced most problems in life areas fatigue (37.3%) and pain (35.3%), these were also the life areas that were most often addressed at consultation. The life areas that gave problems and that were least addressed during consultation were intimate relationships & sexuality (66.7%) and household chores (58.8%). CONCLUSIONS: Despite an overall high level of patient perceived PCC delivered by NPs, patient with low disease activity frequently reported problems in life areas not addressed at consultation. IMPLICATIONS FOR PRACTICE: Implementation of the Self-Management Web and changing the focus of NP consultations may help to improve accommodating individual patient needs.

Evaluation of a Nurse-led Aftercare Intervention for Patients With Head and Neck Cancer Treated With Radiotherapy and Cisplatin or Cetuximab.

BACKGROUND: The supportive needs for head and neck cancer (HNC) patients during the vulnerable period after treatment are not always met. Therefore, more professional support regarding physical, social, and psychological care as well as lifestyle is recommended. OBJECTIVE: This study is an evaluation of a nurse-led aftercare intervention to support patients recovering from HNC treatment. METHODS: Intervention group (IG) participants received 2 extra consultations from a nurse practitioner 3 and 9 months after treatment of HNC. A holistic conversational tool, the Self-Management Web, was developed to guide the nurse through the conversation. Primary outcomes were health-related quality of life (HRQoL) and quality of patient-centered care. A secondary outcome was self-management skills. RESULTS: Twenty-seven patients were included in the IG, and 28 were included in the control group. Differences in HRQoL and self-management between the IG and the control group were not statistically significant. For the IG, all domains of the Self-Management Web were perceived important and addressed by the nurse practitioner. CONCLUSION: This holistic nurse-led aftercare intervention was highly appreciated by HNC patients. Although the intervention met the need for support in recovery after treatment, it did not improve HRQoL or self-management skills. IMPLICATIONS OF PRACTICE: For both nurses and patients, the intervention is feasible and acceptable in daily practice. Self-management support for patients after their cancer treatment is of added value and has potential to improve the quality of regular follow-up care.

Evaluation of a Nurse-Led Patient Navigation Intervention: Follow-Up of Patients After Autologous and Allogeneic Stem Cell Transplantation.

BACKGROUND: Complex survivorship cancer care requires nurse-led interventions. Therefore, a nurse-led patient navigation intervention was developed in which trained cancer nurses gave advice and referred to other professionals during the process of recovery and rehabilitation of hematopoietic stem cell transplantation (HSCT) patients. OBJECTIVE: The aim of this study was to understand the nature and effect of this nurse-led information and referral intervention. METHODS: Of the 199 included patients in the intervention group, 75 completed the quality of life, quality of care, self-efficacy, and self-management behavior questionnaires at baseline and at 6 and 12 months after HSCT. A historical control group of 62 patients completed the same questionnaires 12 months after HSCT. In addition, patients' experiences with the intervention were evaluated in 2 focus groups. RESULTS: Patients emphasized the holistic approach of the cancer nurses and the opportunity to discuss psychosocial domains of life. Within the intervention group, a statistically significant effect on quality of life was demonstrated over time. The differences in quality of life, self-efficacy, and self-management were not significant between the intervention group and control group. CONCLUSION: The holistic focus of this nurse-led intervention proved to be acceptable to the HSCT patients and promising in supporting the (complex) challenges that these patients face during their process of recovery and rehabilitation. IMPLICATIONS FOR PRACTICE: Nurse-led patient navigation interventions with a holistic approach when included in the daily practice of complex survivorship cancer care can support HSCT patients' information and referral needs during their rehabilitation.

Evaluating the feasibility of a nurse-led self-management support intervention for kidney transplant recipients: a pilot study.

BACKGROUND: To support effective self-management after kidney transplantation, a holistic nurse-led self-management support intervention was developed using the Intervention Mapping approach. The primary aim was to evaluate the feasibility, acceptability and fidelity of the intervention for kidney transplant recipients and professionals. The secondary aim was to explore preliminary effects on outcomes. METHODS: A pilot study was conducted in 2015-2017 to evaluate the intervention. Nurse Practitioners (NP) guided recipients in assessing 14 life areas using the Self-Management Web. Participants were supported in developing self-regulation skills which can be applied to self-management of the illness. Strategies included goal setting, action planning, and promotion of motivation and self-efficacy. Adult recipients from an outpatient clinic of a Dutch University Hospital who underwent their transplant at least 1 month ago, were invited to participate. NPs, nephrologists and recipients were interviewed to assess feasibility, fidelity and implementation experience. Consultations were videoed and analysed to assess fidelity. To assess the preliminary effects, the intervention group completed baseline (T0) and follow-up (T1) questionnaires on self-management behavior, self-efficacy, quality of life and quality of care. A historical control group of kidney transplant recipients completed the same questionnaires at T1. RESULTS: Twenty-seven recipients agreed to participate in the intervention group, of which 24 completed the intervention and 16 completed baseline and follow-up surveys. The control group consisted of 33 recipients. Professionals and recipients appraised the open, holistic focus of the intervention as a welcome addition to standard care and felt that this helped to build a relationship of trust. Recipients also felt they became more competent in problem-solving skills. The within-group analysis showed no significant increase in patients' self-management skills. The between-groups analysis showed significantly higher medication adherence among the intervention group (P = 0.03; G = 0.81). The within-groups analysis showed a significantly higher perceived quality of care (P = 0.02) in the intervention group. CONCLUSION: This holistic nurse-led self-management support intervention was found to be feasible and acceptable by professionals and recipients alike. This pilot had a small sample therefore further research is needed into the potential effects on self-management behavior and well-being of transplant recipients. ISRCTN Trial Registry: ISRCTN15057632 (registered retrospectively on 20-07-2018).

A Nurse-Led Self-Management Support Intervention (ZENN) for Kidney Transplant Recipients Using Intervention Mapping: Protocol for a Mixed-Methods Feasibility Study.

BACKGROUND: Optimal self-management in kidney transplant recipients is essential for patient and graft survival, reducing comorbidity and health care costs while improving the quality of life. However, there are few effective interventions aimed at providing self-management support after kidney transplantation. OBJECTIVE: This study aims to systematically develop a nurse-led, self-management (support) intervention for kidney transplant recipients. METHODS: The Intervention Mapping protocol was used to develop an intervention that incorporates kidney transplant recipients' and nurses' needs, and theories as well as evidence-based methods. The needs of recipients and nurses were assessed by reviewing the literature, conducting focus groups, individual interviews, and observations (step 1). Based on the needs assessment, Self-Regulation Theory, and the "5A's" model, change objectives were formulated (step 2). Evidence-based methods to achieve these objectives were selected and subsequently translated into practical implementation strategies (step 3). Then, program materials and protocols were developed accordingly (step 4). The implementation to test the feasibility and acceptability was scheduled for 2015-2017 (step 5). The last step of Intervention Mapping, evaluation of the intervention, falls outside the scope of this paper (step 6). RESULTS: The intervention was developed to optimize self-management (support) after kidney transplantation and targeted both kidney transplant recipients and nurse practitioners who delivered the intervention. The intervention was clustered into four 15-minute sessions that were combined with regular appointments at the outpatient clinic. Nurses received a training syllabus and were trained in communication techniques based on the principles of Solution-Focused Brief Therapy and Motivational Interviewing; this entailed guiding the patients to generate their own goals and solutions and focus on strengths and successes. Kidney transplant recipients were encouraged to assess self-management challenges using the Self-Management Web and subsequently develop specific goals, action plans, and pursuit skills to solve these challenges. CONCLUSIONS: The Intervention Mapping protocol provided a rigorous framework to systematically develop a self-management intervention in which nurses and kidney transplant recipients' needs, evidence-based methods, and theories were integrated. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/11856.

Correction to: S11 Experiences with a nurse-led self-management support intervention for people with chronic conditions; a mixed-methods approach.

[This corrects the article DOI: 10.1186/s12912-018-0301-3.].

Skills for Growing Up-Epilepsy: An exploratory mixed methods study into a communication tool to promote autonomy and empowerment of youth with epilepsy.

INTRODUCTION: The consequences of having epilepsy seriously hamper the development of autonomy for youth with epilepsy (YWE) and limit their social participation. This study was designed to provide insight into the impact of epilepsy on autonomy and empowerment and to evaluate the use of the Skills for Growing Up (SGU-Epilepsy) communication tool in pediatric epileptic care. METHODS: A mixed methods design was used to examine the impact of epilepsy on autonomy and empowerment and to evaluate the feasibility and use of the SGU-Epilepsy. Six focus groups with YWE and their parents were organized (N = 27), and the benefits of the SGU-Epilepsy were evaluated (N = 72). RESULTS: Youth with epilepsy struggled with social participation. Beliefs of YWE and their parents on managing daily life and taking medication were not always similar. Parents worried about the passive attitude of YWE, but autonomy of YWE seemed to be constrained by parents. The SGU-Epilepsy seemed to be feasible. It facilitated the communication on development and empowerment although it was sometimes confronting for parents. Not all YWE were motivated to use and discuss the tool. In the evaluation, no differences in perceived autonomy and empowerment between YWE who used SGU-Epilepsy and received usual care appeared. CONCLUSION: On the short-term, a beneficial effect of using the SGU-Epilepsy on autonomy and empowerment for YWE and their parents was not shown. The SGU-Epilepsy seemed to be a feasible instrument, however, to address nonmedical issues during pediatric consultations.

"What we want": chronically ill adolescents' preferences and priorities for improving health care.

BACKGROUND: As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents' preferences regarding providers' qualities, and outpatient and inpatient care. Furthermore, suggestions for improvement of service delivery were collected. METHODS: This research was a sequential mixed methods study in adolescents aged 12-19 years with various chronic conditions treated in a university children's hospital. Methods comprised 31 face-to-face interviews at home, a hospital-based peer research project in which nine adolescents interviewed 34 fellow patients, and a web-based questionnaire (n = 990). Emerging qualitative themes were transformed into questionnaire items. RESULTS: Having "a feeling of trust" and "voice and choice" in the hospital were central to these adolescents. Regarding providers' qualities, "being an expert" and "being trustworthy and honest" were ranked highest, followed by "being caring and understanding", "listening and showing respect", and "being focused on me". Regarding outpatient consultations, preferences were ranked as follows: "answering all questions"; "attending to my and my parents' needs"; and "clear communication", while "limited waiting times" and "attractive outpatient surroundings" scored lowest. Regarding hospitalization, adolescents most preferred to "avoid pain and discomfort", "keep in touch with home", and "be entertained", while "being hospitalized with peers" and "being heard" were least important. Regarding priorities for improvement, 52% of the respondents felt that more attention should be paid to older children, followed by enabling more contact with family and friends (45%), shorter waiting times (43%), and more activities to meet fellow patients (35%). CONCLUSION: Adolescents prefer technically competent providers, who are honest and trustworthy, and attend to their needs. As they gradually grow out of the pediatric environment, they desire staff attitudes to become less childish and more age-appropriate, and welcome being treated as an equal partner in care. Health care professionals should inquire into preferences and adjust their communication style accordingly.

Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors.

PURPOSE: To explore associations between adolescents' perception of their readiness to transfer to adult care and socio-demographic and disease-related characteristics, effect of the condition, self-management ability, and attitude toward transition. METHODS: A cross-sectional study was conducted in a Dutch university hospital, where all adolescents (12-19 years) with somatic chronic conditions (n = 3,648) were invited to participate in a web-based questionnaire. Invitations were issued to those without an intellectual disability and who had been under treatment for at least 3 years. RESULTS: In all, 30% (n = 1,087) of the adolescents responded; 954 assessed their perception of readiness for transfer. The majority (56%) felt that they were ready for transfer. Logistic regression analyses showed that 48% of the total variance in transfer readiness (TR) could be explained. Feeling more self-efficacious in skills for independent hospital visits and a greater perceived independence during consultations were found to be most strongly associated with being ready to transfer. Higher TR was associated with older age, but age did not prove to be the most important explaining variable. Adolescents with a more positive attitude toward transition and those who reported more discussions related to future transfer also felt more ready. Disease-related factors and effect of the condition including quality of life were only weakly associated with higher TR. CONCLUSIONS: Adolescents' attitude to transition and their level of self-efficacy in managing self-care seem to be the keystones to TR. This study suggests that individual transition plans and readiness assessments might prove to be beneficial. Strengthening adolescents' independence and self-management competencies, combined with early preparation and repeated discussions on transition, seem to be useful strategies to increase adolescents' readiness for transfer to adult care.

Using the new board game SeCZ TaLK to stimulate the communication on sexual health for adolescents with chronic conditions.

OBJECTIVE: This study evaluated the feasibility and appreciation of a new educational board game (SeCZ TaLK) that stimulates communication on sexuality and intimate relationships in youth with chronic conditions. METHODS: 85 adolescents with chronic conditions or disabilities piloted the board game in three rehabilitation centers/schools for the disabled, one outpatient clinic and a patient organization. They assessed their experiences through a brief questionnaire, as did 12 health care professionals and teachers who acted as facilitators. RESULTS: Eighty-five percent of the adolescents found it is (very) important to discuss sexuality and intimate relationships; 81% felt that SeCZ TaLK enabled this. Girls were more positive about the game than boys (p<.05) and younger participants were more positive than older ones (p<.01). Youth in an outpatient clinic appreciated the game most (p<.05) compared to other settings. Professionals asserted that discussing these issues is important for their work and would recommend the game to colleagues. CONCLUSION: SeCZ TaLK is a promising tool for improving communication on sexuality with youth with special health care needs. PRACTICE IMPLICATIONS: Health care providers and teachers are recommended to use interventions such as SeCZ TaLK to stimulate communication about sexual health with adolescents with chronic conditions.

A cluster-randomized trial of screening for language delay in toddlers: effects on school performance and language development at age 8.

OBJECTIVE: The goal of this study was to assess the effects of screening and early treatment of preschool children for language delay on language development and school performance at age 8. METHODS: A cluster-randomized, controlled trial and follow-up study of 55 child health centers in 6 geographic regions were conducted from January 2002 to September 2005. A total of 9419 children who were from the general population and aged 15 months at entry were studied. School type end school progress was known for 5406 (57.4%) children. In the intervention group, a structured screening instrument was conducted twice (at ages 15/18 and 24 months), and usual care was applied in the control group. The screening instrument consisted of a uniform set of questions for the parents and test elements for the child. A positive screen result was followed by multidisciplinary assessments at speech and hearing centers and subsequent early treatment if needed. Percentages of children who attended a special school, repeated a class because of language problems, and scored low on standardized language tests, in intention-to-screen analyses, were measured. RESULTS: At age 8, 2.7% in the intervention group and 3.7% in the control group attended a special school, 6.1% vs 4.9% had repeated a grade, 8.8% vs 9.7% had deficient oral language performance, 4.7% vs 4.7% had deficient reading, and 2.8% vs 4.2% had deficient spelling. CONCLUSIONS: Screening toddlers for language delays reduces the number of children who require special education and leads to improved language performance at age 8. Nationwide implementation of the screening might be recommended.

Quality of life of children with language delays.

We investigated health-related quality of life (HRQOL) of children with language problems and controls. Data on language development (Language Screening Instrument 3-years-olds, Van Wiechen items) and HRQOL by means of the TNO-AZL Pre-school children Quality of Life-questionnaire (TAPQOL) were collected at age 3 in a population-based cohort by parental questionnaire (n = 8877, response 78%; mean age 39.1 months (SD 2.0), 4347 were girls). Cronbach's alpha (internal consistency) ranged between 0.63 and 0.85. Dependent on the definition of language problem, 131 to 316 children appeared to be language impaired. Receiver Operating Characteristic analyses (ROC-curves) to assess the discriminative ability of six TAPQOL scales revealed that the Communication scale and Social Functioning scale discriminated best between children with language problems and children without these problems. Language-impaired children had significantly lower scores on the Communication scale and Social Functioning scale as compared to children without language problems (p < 0.01). The findings indicate that language problems at age three can have an impact on children's social life. These results provide additional evidence for the importance of monitoring the language development and its consequences during childhood.