Coping with and self-management of chronic painful chemotherapy-induced peripheral neuropathy: a qualitative study among cancer survivors.

PURPOSE: Patients with chronic painful chemotherapy-induced peripheral neuropathy (CIPN) may experience a negative impact of CIPN on daily life. They can use various coping (i.e., dealing with symptoms and resulting impairments in general) and self-management (i.e., practical actions to reduce symptoms) strategies to live with their limitations. This paper aimed to examine experienced helpful coping and self-management strategies of patients with chronic painful CIPN. METHODS: Semi-structured interviews were conducted with twelve patients with chronic painful CIPN. We applied a hybrid deductive-inductive coding approach. ATLAS.ti was used for coding. RESULTS: Generated from the data were two themes and nine codes for coping and four themes and 31 codes for self-management strategies. Coping of patients often included active strategies like planning, seeking social support, and acceptance. Additionally, patients often used passive strategies such as focusing on and venting emotions and suppressing competing activities. The most common self-management strategies were mostly passive (i.e., medication, deliberate choice of shoes, resting, sitting, and consulting healthcare professionals) but also active (i.e., exercising) strategies. CONCLUSION: Patients exhibit a great variety of coping and self-management strategies that they perceive as helpful to deal with chronic painful CIPN. However, research has shown that certain strategies are not that helpful or even come with aversive effects. More research into the effectiveness and implementation of psychosocial interventions is needed since it may help patients adopting helping strategies. In addition, healthcare professionals need to refer patients with CIPN in a timely manner to physical therapists, occupational therapists, or rehabilitation teams to reduce or prevent (further) impairments. IMPLICATIONS FOR CANCER SURVIVORS: Patients can consult one of their healthcare providers in case of problems in dealing with their symptoms, to get proper guidance and possible referral.

Social Support Among Women With Potential Essure-Related Complaints: Analysis of Facebook Group Content.

BACKGROUND: Social support groups are an important resource for people to cope with problems. Previous studies have reported the different types of support in these groups, but little is known about the type of reactions that sharing of personal experiences induce among members. It is important to know how and to what extent members of support groups influence each other regarding the consumption of medical care. We researched this in a web-based Facebook group of women sterilized with Essure. Essure was a device intended for permanent contraception. From 2015 onward, women treated with Essure for tubal occlusion raised safety concerns and numerous complaints. OBJECTIVE: This study aimed to evaluate the use of social support in a Facebook community named "Essure problemen Nederland" (EPN; in English, "Essure problems in the Netherlands"). METHODS: All posts in the closed Facebook group EPN between March 8 and May 8, 2018, were included. In total, 3491 Facebook posts were analyzed using a modified version of the Social Support Behavior Codes framework created by Cutrona and Suhr in 1992. Posts were abstracted and aggregated into a database. Two investigators evaluated the posts, developed a modified version of the Social Support Behavior Codes framework, and applied the codes to the collected data. RESULTS: We found that 92% of messages contained a form of social support. In 68.8% of posts, social support was provided, and in 31.2% of posts, social support was received. Informational and emotional support was the most frequently used form of provided social support (40.6% and 55.5%, respectively). The same distribution was seen with received social support: informational support in 81.5% and emotional support in 17.4% of cases. Our analysis showed a strong correlation between providing or receiving social support and the main form of social support (P<.001). In a total of only 74 (2.2%) cases, women advised each other to seek medical care. CONCLUSIONS: The main purpose of women in the EPN Facebook group was to provide and receive informational or emotional support or both.

Experiences of cancer survivors with chemotherapy-induced peripheral neuropathy in the Netherlands: symptoms, daily limitations, involvement of healthcare professionals, and social support.

PURPOSE: A significant proportion of cancer patients suffer from chemotherapy-induced peripheral neuropathy (CIPN). This descriptive study aimed to examine patients' experience of CIPN symptoms, daily limitations, involvement of healthcare professionals, and social support. METHODS: Cross-sectional data have been collected in the Netherlands via a national online questionnaire comprising closed items only (February 2021). RESULTS: Out of 3752 respondents, 1975 received chemotherapy only (i.e., without targeted therapy) and were therefore included. The majority (71.2%) reported symptoms in both hands and feet (e.g., tingling and loss of sensation or diminished sensation). Participants reported most limitations in household chores, social activities, hobbies, sports, walking, and sleeping and least in family/(taking care of) children, cycling, driving, self-care, eating and drinking, and sexuality and intimacy. Many patients indicated that their healthcare professionals informed them about the possibility of CIPN development before treatment (58.4%), and they paid attention to CIPN during and after treatment (53.1%). However, many patients (43%) reported a lack of information on what to do when CIPN develops. Few participants (22%) visited their general practitioner (GP) for CIPN. In general, patients' social environments sometimes to always showed empathy to patients. CONCLUSIONS: Symptoms of CIPN are frequently reported and can result in various daily limitations. Support from professionals and peers is crucial in managing CIPN, which is sometimes lacking. Appropriate guidance and support should be provided to patients to decrease the impact of CIPN on daily life. Future research should investigate differences in chemotherapeutic agents and the resulting symptoms and consequences.

Patient-centered development of Embrace Pain: an online acceptance and commitment therapy intervention for cancer survivors with chronic painful chemotherapy-induced peripheral neuropathy.

BACKGROUND: Around 30% of cancer survivors suffer from chemotherapy-induced peripheral neuropathy (CIPN) ≥6 months after completion of chemotherapy, which comes with limitations in daily functioning and worsened quality of life(QoL). Treatment options are scarce. Our aim was to develop an online self-help intervention based on Acceptance and Commitment Therapy (ACT) to reduce pain interference in cancer survivors experiencing painful chronic CIPN. MATERIAL AND METHODS: This article applied a patient-centered design process using the Center for eHealth Research (CeHRes) roadmap. User needs were examined using online semi-structured interviews with patients and experts (N = 23). Interviews were transcribed verbatim and analyzed using thematic analysis. Personas were created based on interviews. Intervention content was based on identified user needs and ACT. Content and design were finalized using low-fidelity prototype testing (N = 5), and high-fidelity prototype testing (N = 7). RESULTS: Patients appreciated and agreed with the elements of ACT, had varying guidance needs, and wanted to have autonomy (e.g., moment and duration of use). Additionally, it was important to be aware that patients have had a life-threatening disease which directly relates to the symptoms they experience. Patients reported to prefer a user-friendly and accessible intervention. Similar points also emerged in the expert interviews. The final intervention, named Embrace Pain, includes six sessions. Session content is based on psychoeducation and all ACT processes. Further interpretation of the intervention (such as quotes, guidance, and multimedia choices) is based on the interviews. CONCLUSION: This development demonstrated how a patient-centered design process from a theoretical framework can be applied. Theory-driven content was used as the basis of the intervention. Findings show an online ACT intervention designed for cancer survivors with painful chronic CIPN.

AYAs' online information and eHealth needs: A comparison with healthcare professionals' perceptions.

BACKGROUND: Adolescents and young adults (AYAs) diagnosed with cancer fulfill their cancer-related information needs often via the Internet. Healthcare professionals (HCPs) have a crucial role in guiding patients in finding appropriate online information and eHealth sources, a role that is often overlooked. Misperceptions of AYAs' needs by HCPs may lead to suboptimal guidance. We aimed to examine the extent to which AYAs' online information and eHealth needs corresponded with HCPs' perceptions of these needs. METHODS: Two cross-sectional online surveys (AYAs, n = 299; HCP, n = 80) on online information and eHealth needs were conducted. HCPs provided indications of their perceptions of AYA's needs. RESULTS: AYAs reported significantly more online information needs compared with HCPs' perceptions regarding: survival rates (AYA = 69%, HCP = 35%, p < 0.001), treatment guidelines (AYA = 65%, HCP = 41%, p < 0.001), return of cancer (AYA = 76%, HCP = 59%, p = 0.004), "what can I do myself" (AYA = 68%, HCP = 54%, p = 0.029), and metastases (AYA = 64%, HCP = 50%, p = 0.040). Significantly more unmet eHealth needs were reported by AYAs compared with HCPs relating to access to own test results (AYA = 25, HCP = 0%, p < 0.001), request tests (AYA = 30%, HCP = 7%, p < 0.001), medical information (AYA = 22%, HCP = 0%, p = 0.001), e-consult with nurses (AYA = 30%, HCP = 10%, p < 0.001), e-consult with physicians (AYA = 38%, HCP = 13%, p = 0.001), and request prescriptions (AYA = 33%, HCP = 21%, p = 0.009). CONCLUSION: AYAs' online information and eHealth needs are partially discrepant with the impression HCPs have, which could result in insufficient guidance related to AYAs' needs. AYAs and HCPs should get guidance regarding where to find optimal information in a language they understand. This may contribute to AYAs' access, understanding, and satisfaction regarding online information and eHealth.

Effectiveness of the online Acceptance and Commitment Therapy intervention "Embrace Pain" for cancer survivors with chronic painful chemotherapy-induced peripheral neuropathy: study protocol for a randomized controlled trial.

BACKGROUND: About 30% of cancer survivors suffer from chemotherapy-induced peripheral neuropathy (CIPN) ≥6 months after completion of chemotherapy. This condition, for which treatment options are scarce, comes with limitations in daily life functioning and decreased quality of life. The current study examines the effectiveness of an online self-help intervention based on Acceptance and Commitment Therapy (ACT) in comparison to a waiting list condition (WLC) to deal with CIPN. In addition, it examines which factors moderate effects and to what extent the effects differ between guided and unguided ACT intervention. METHODS: A two-parallel, non-blinded randomized controlled trial (RCT) will be carried out. Adult cancer survivors who experience painful CIPN for at least 3 months and completed chemotherapy at least 6 months ago will be recruited (n=146). In the intervention condition, participants will follow an 8-week self-management course containing 6 modules regarding psychoeducation and ACT processes, including therapeutic email guidance. By means of text and experiential exercises, supplemented with illustrations, metaphors, and audio files, people will learn to carry out value-oriented activities in their daily life with pain. Participants will learn new ways of coping with pain, including reducing pain avoidance and increasing pain acceptance. Participants in the WLC will be invited to follow the intervention without therapeutic guidance 5 months after start. Pain interference is the primary outcome, while psychological distress, quality of life, CIPN symptom severity, pain intensity, psychological flexibility, mindfulness skills, values-based living, and pain catastrophizing will serve as secondary outcomes. All outcome measures will be evaluated at inclusion and baseline, early-intervention, mid-intervention, post-treatment, and 3- and 6-month post-treatment. Qualitative interviews will be conducted post-treatment regarding experiences, usage, usability, content fit, and satisfaction with the intervention. DISCUSSION: This study will provide valuable information on the effectiveness of an online self-help intervention based on ACT versus WLC for chronic painful CIPN patients. TRIAL REGISTRATION: ClinicalTrials.gov NCT05371158 . Registered on May 12, 2022. PROTOCOL VERSION: version 1, 24-05-2022.

Symptoms of pre-treatment anxiety are associated with the development of chronic peripheral neuropathy among colorectal cancer patients.

PURPOSE: Identifying potentially modifiable predictors of chronic (chemotherapy-induced) peripheral neuropathy (PN) is important, especially in light of the limited treatment options. We aimed to examine pre-treatment anxiety and depressive symptoms as predictors of chronic PN symptom severity in colorectal cancer (CRC) patients up to 2 years after diagnosis. METHODS: Newly diagnosed CRC patients from four Dutch hospitals were eligible for participation. Patients (N = 336) completed a questionnaire on anxiety and depressive symptoms (HADS) and sensory (SPN) and motor peripheral neuropathy (MPN) (EORTC QLQ-CIPN20) before initial treatment (baseline) and 1 and 2 years after diagnosis. Patients were included in the analyses if they either developed some level of SPN or MPN symptoms, or experienced a worsening of pre-treatment SPN or MPN symptoms. RESULTS: At 1-year follow-up, 115 patients (34%) reported SPN symptoms and 134 patients (40%) reported MPN symptoms. Of these patients, SPN and MPN symptoms had not returned to baseline level at 2-year follow-up in, respectively, 51% and 54% of patients. In multivariable regression analyses, neither pre-treatment anxiety symptoms nor pre-treatment depressive symptoms were associated with SPN or MPN symptom severity at 1-year follow-up. At 2-year follow-up, pre-treatment anxiety symptoms (ß = 0.44, p = 0.01), but not depressive symptoms, were associated with SPN symptom severity. CONCLUSIONS: Pre-treatment anxiety symptoms, but not depressive symptoms, were associated with SPN symptom severity 2 years after diagnosis. Future studies are needed that assess whether interventions targeted to reduce anxiety before and during treatment can reduce chronic PN severity or even prevent the persistence of PN.

Towards eHealth to support the health journey of headache patients: a scoping review.

OBJECTIVE: The aim of this study is to (1) review the digital health tools that have been used in headache studies, and (2) discuss the effectivity and reliability of these tools. BACKGROUND: Many headache patients travel a long and troublesome journey from first symptoms until a meaningful care plan. eHealth, mHealth, and digital therapeutic modalities have been advocated as the way forward to improve patient care. METHOD: Online databases PubMed, Cinahl, and PsycINFO were searched using a predefined search query. A data extraction form was used to gather relevant data elements from the selected papers. RESULTS: A total of 39 studies were selected. The studies included 94,127 participants. The majority of studies focused on diaries (N = 27 out of 39). Digital (cognitive) behavioral therapy were also quite common (N = 7 out of 39). Other digital health tool categories were tele-consultations, telemonitoring and patient portals. CONCLUSION: Many digital health tools for headache patients regarding diaries and behavioral/therapeutical treatment are described in scientific research with limited information on effectivity and reliability. Scientific knowledge with regard to other categories such as tele-consultations, patient portals, telemonitoring including medication adherence, online information resources, wearable, symptom checkers, digital peer support is still scarce or missing.