From Surviving Cancer to Getting on With Life: Adult Testicular Germ Cell Tumor Survivors' Perspectives on Transition From Follow-Up Care to Long-Term Survivorship

With an increasing incidence and a high cure rate, a growing number of testicular germ cell tumor (TGCT) survivors require specialized follow-up care. However, knowledge of these patients' needs is lacking, leaving TGCT survivors with unmet care needs at risk of symptom burden when transitioning to long-term survivorship. This grounded theory study aimed to understand the perspectives of TGCT survivors' transition from follow-up care to long-term survivorship. A total of 12 adult TGCT survivors in follow-up care or completion less than a year were in-depth semi-structured interviewed. Interviews were audiotaped and transcribed verbatim. Transcripts were analyzed by constant comparison, and the core category "Dealing with back-and-forth forces" emerged in the integrated concepts. Two comparative processes in dealing with those forces were identified: the process of Living beyond the sword of Damocles involved the transition from feeling threatened by cancer to overcoming those threats; the process of Getting on with one's life can be described as transitioning from a period where cancer overruled their lives to carrying on with everyday life. The processes toward long-term survivorship follow general characteristics; the transition itself is an individual journey that depends on (life) experiences. The constructed model can guide healthcare professionals and researchers involved in TGCT survivorship to understand TGCT survivors' individual and ensuing needs. When TGCT survivors receive individualized and tailored follow-up care, it can assist in preventing and reducing long-term and late effects on long-term survivorship

Perspectives and Concerns on Late Effects Regarding Sexuality among Adolescents and Young Adults Treated for Testicular Germ Cell Tumor: The PRICELESS-Study-A Qualitative Study

This study aimed to explore perspectives and concerns regarding sexuality among adolescents and young adults (AYAs) possibly experiencing late effects after testicular germ cell tumor (TGCT) treatment. A qualitative study was performed in which semi-structured interviews were held with thirteen AYAs from a center of expertise for TGCT in the Netherlands. Data were analyzed using Braun and Clark's thematic analysis method. Seven interacting and interconnected themes were found: desire to have children, rediscovering sexuality, insecurity about sexual performance, acceptance of physical change, loss of masculinity, burden on relationship, and openness in discussing sexuality. Concerns about the desire to have children seem to play a significant role. In conclusion, TGCT patients face multiple changes (physical, emotional, relational, and sexual), followed by a difficult period of acceptance, after which a new phase of rediscovering sexuality appeared. These findings can help to make healthcare professionals aware of the underlying mechanisms and concerns about sexuality. Furthermore, insights can help to develop sexuality-themed items for a broader monitoring tool to structurally assess the late effects to support discussing sexuality

Treatment decision-making and the added value of the general practitioner: A qualitative exploration of cancer patients' perspectives

OBJECTIVE: Cancer patients are increasingly involved in decision-making for cancer treatment. General practitioners' (GPs) support in this process is advocated. Therefore, GPs need to be aware of patients' treatment decision-making process and their potential role. We aim to understand the treatment decision-making process and to explore the added value of GP involvement, from the perspective of cancer patients treated with curative intent. METHODS: An explorative qualitative study was performed. Semi-structured interviews were conducted with 20 purposively sampled Dutch cancer patients treated with curative intent. RESULTS: Patients' treatment decision-making process was dominated by a focus on 'safeguarding survival'. Patients generally followed the treatment plan as proposed by their physician and did not always experience having a treatment choice. The majority of patients expressed added value for GP involvement, mainly to provide psychological support, but also for providing shared decision-making (SDM) support. CONCLUSION: The treatment decision-making process of cancer patients treated with curative intent is dominated by the urge to 'safeguard survival'. GPs should be aware of their added value in providing psychological support and their potential role to support SDM following a cancer diagnosis

Evaluation Of The Role Of Nurse Practitioners In Masterplan

Background: Preserving kidney function and prevention of cardiovascular disease can only be achieved if patients are supported in self-managing their disease aimed at developing coping strategies. Objectives: In MASTERPLAN, a clinical trial from 2005 -2010, patients with chronic kidney disease were randomised to receive nurse practitioner (NP) support or physician care alone. We evaluated the role of NP and patients in achieving lifestyle treatment goals. However the evaluation of lifestyle interventions resulted in disappointing findings. Design: We conducted a mixed method study to explain the previous quantitative results in order to achieve a more complete description of the practice of reaching lifestyle goals Participants: Ten NPs in nine participating hospitals of the MASTERPLAN study were interviewed and identified a hierarchy on what treatment goals received the most attention during MASTERPLAN, at baseline and after four years. Results: A shift of attention in study goals occured for various reasons e.g. progression of disease, too many goals, non-motivated patients, changed relationship between NP and patient. Different strategies were used to influence lifestyle change with varying degrees of success. Conclusion: Lifestyle change is difficult to maintain during five years follow up. Besides a shift of attention in study goals, the relationship with the patient also changed over time

The balancing perspective of hard-to-reach hepatitis C patients who were lost to follow-up: A qualitative study.

BACKGROUND:In the foreseeable future, patients with hepatitis C virus (HCV) with good healthcare access will all have been cured and the lost to follow-up (LFU) HCV-population will increasingly exist of hard-to-reach patients. Efforts to retrieve these individuals with HCV have been moderately successful so far. A deeper understanding of the reasons for loss to follow-up and the underlying processes is lacking. AIMS:To explore reasons for previous loss to follow-up in patients with HCV who have been brought back into care. METHODS:In 2017, fifteen patients with HCV who were evaluated at the University Medical Center Utrecht (UMCU) Infectious diseases outpatient clinic as part of the "REtrieval And cure of Chronic Hepatitis C" (REACH)-project were included in this study through convenience sampling. Face-to-face semi-structured in-depth interviews were conducted and a qualitative analysis based on the grounded theory was applied. RESULTS:A basic socio- psychological process named "maintaining the achieved balance" was uncovered in patients with HCV who were LFU. This "achieved balance" is the result of a transformative process following the initial HCV diagnosis. It is a steadfast stance in which participants keep HCV out of sight and in the margin of their lives in order to reestablish an optimal state of well-being. The balancing perspective is subsequently defended by repeated evasive behavioral patterns to avoid confrontation with the disease. CONCLUSION:The balancing perspective gives insight into why individuals with HCV were not retained in care but also why they remained LFU thereafter. Physicians should realize that this mindset can be persistent and repeated efforts may be needed to finally trace and retrieve these patients

Patients' perspectives on the COPD-GRIP intervention, a new nursing care intervention for COPD

BACKGROUND: The nurse-led chronic obstructive pulmonary disease-Guidance Research on Illness Perception (COPD-GRIP) intervention was developed to incorporate illness perceptions into COPD care with the intention to improve the health-related quality of life of COPD patients. This individualized intervention focuses on identifying, discussing and evaluating illness perceptions and consists of three consultations with a practice nurse. The aim of this study is to explore patients' experiences regarding the COPD-GRIP intervention. METHODS: A qualitative interview study nested in a cluster randomized trial in primary care. One-time semi-structured individual interviews with COPD patients who were guided with the COPD-GRIP intervention were conducted. During data collection, the constant comparative approach was used. All interviews were recorded, transcribed, anonymized and uploaded to MAXQDA. To identify themes, the transcripts were independently coded by two researchers. RESULTS: Sixteen patients were interviewed. All patients were positive and experienced an additional value of the COPD-GRIP intervention in different areas. Three main themes were identified and show that taking part in this intervention made the patients feel 'listened to and acknowledged', improved their awareness of the disease and its management and helped them to make lifestyle changes. Some patients suggested that the individualized care plan could be improved and to start the intervention immediately after being informed of the COPD diagnosis. All patients recommended this intervention. CONCLUSION: The results of this study indicate that patients acknowledge that the COPD-GRIP intervention is a useful and promising tool for providing individualized COPD care

Self-management support in patients with adrenal insufficiency

OBJECTIVE: Patient education is an important intervention to prevent an adrenal crisis in patients with adrenal insufficiency. The objective of this study was to assess the knowledge of adjusting the dose of glucocorticoids in special circumstances in patients with adrenal insufficiency who had previously been educated on this topic. In patients with insufficient knowledge, we tried to identify the underlying causes and care needs. DESIGN: Quantitative and qualitative study. METHODS: Adult patients with chronic primary and secondary adrenal insufficiency who received glucocorticoid stress management education were invited to participate in a telephone interview in which we tested their knowledge using hypothetical situations of physical and mental stress. In respondents with insufficient knowledge, we conducted a qualitative semistructured interview to elicit the underlying reasons from patients' perspective for their lack of knowledge and determine their care needs. RESULTS: Forty-three of the 83 patients who previously received education had insufficient knowledge about how to act during stressful situations. We found a significant association between education level and level of knowledge after the educational consult. The following underlying factors were identified: unawareness of the seriousness of their condition, ineffective coping strategies, the lack of experience with self-management skills and misconceptions. The most important care needs were repetition of education, the use of guidelines, learning from experience and optimizing social support. CONCLUSION: One or two educational consults are not effective to achieve adequate self-management skills. There is a need for structural follow-up where education is repeated and practical implementation of this knowledge is tested in order to identify the potential inadequate action

From intention to STI prevention: An online questionnaire on barriers and facilitators for discussing sexual risk behaviour among HIV nurses.

We aimed to elucidate facilitators and barriers that HIV nurses experience in discussing sexual risk behaviour with HIV-positive men who have sex with men, using variables from a previous qualitative study and the theory of planned behaviour

Adherence to HAART:processes explaining adherence behavior in acceptors and non-acceptors

In order to explore and clarify the underlying processes which lead to (non)-adherence behavior in patients treated with highly active antiretroviral therapy (HAART), a qualitative study was conducted. Thirty-seven in-depth interviews were held with 30 Caucasian HIV-positive patients. Additional data were collected by diaries kept by some participants. The analysis took place in a cyclic process; selection of themes was alternated with input of new material. Adherence to HAART is mainly influenced by the experience of being HIV positive. Acceptance or non-acceptance of HIV leads to one of two basic stances toward adherence: being determined to be adherent or medication is subordinate to other priorities in life. This stance determines the commitment to therapy and influences how patients cope with adherence. Patients who are determined to be adherent find solutions to adherence problems. Patients who are not determined to be adherent solve problems only if the solution does not compromise important aspects of their lives. Insight is provided into the manner in which prevalent themes; start of HAART, attitude toward medication, HAART in daily life, contextual factors, health and HAART and being informed, influence adherence behavior. Before starting HAART the focus should be on helping the patient to accept HIV as a part of life. The findings need to be taken into account in adherence-promoting interventions