Is patient participation in multidisciplinary tumour conferences associated with their information needs? A multicentre prospective observational study

ObjectivesTo determine the association between participation of patients with breast cancer and patients with gynaecological cancer in their own multidisciplinary tumour conference (MTC) and their information needs with regard to their disease and treatment options.MethodsThis is a prospective observational study that took place at six breast cancer and gynaecological cancer centres in North Rhine-Westphalia, Germany. Patient inclusion criteria included a minimum age of 18 years and at least one diagnosis of breast cancer or gynaecological cancer. Three surveys were administered. T0 (shortly before MTC), T1 (directly after MTC) and T2 (4 weeks after MTC). Patient information needs were measured using two three-item subscales of the Cancer Patients Information Needs scale. Analysis of change was done by one-way repeated measures analysis of variance (ANOVA). To control for sampling bias, a further one-way repeated measures analysis of covariance (ANCOVA) included a propensity score as a covariate.ResultsData from 81 patients in the participation group and 120 patients in the non-participation group were analysed. The patient groups did not differ in their levels of information needs at T0 or T2. From T0 to T2, information needs increased statistically significantly in both groups with regard to both disease-related information (η²=0.354) and treatment-related information (η²=0.250). The increase in both types of information needs lost its statistical significance when the propensity score was included as a covariate. Neither ANOVA nor ANCOVA revealed a statistically significant association between patients’ participation in the MTC and their self-reported information needs.Conclusion and clinical implicationsAs concerns patients’ information needs, findings do not support a general recommendation for or against the participation of patients in their MTCs. Future research should focus on the different ways of patients’ participation in their MTCs facilitated at different cancer centres. Further research should also aim to establish which patient and disease characteristics predispose patients to benefit from participating in their MTCs.

Information needs and perceptions of chatbots for hypertension medication self-management: a mixed methods study

Objective Chatbots have potential to deliver interactive self-management interventions but have rarely been studied in the context of hypertension or medication adherence. The objective of this study was to better understand patient information needs and perceptions of chatbots to support hypertension medication self-management. Materials and Methods Mixed methods were used to assess self-management needs and preferences for using chatbots. We purposively sampled adults with hypertension who were prescribed at least one medication. Participants completed questionnaires on sociodemographics, health literacy, self-efficacy, and technology use. Semi-structured interviews were conducted, audio-recorded, and transcribed verbatim. Quantitative data were analyzed using descriptive statistics, and qualitative data were analyzed using applied thematic analysis. Results Thematic saturation was met after interviewing 15 participants. Analysis revealed curiosity toward chatbots, and most perceived them as humanlike. The majority were interested in using a chatbot to help manage medications, refills, communicate with care teams, and for accountability toward self-care tasks. Despite general enthusiasm, there were concerns with chatbots providing too much information, making demands for lifestyle changes, invading privacy, and usability issues with deployment on smartphones. Those with overall positive perceptions toward chatbots were younger and taking fewer medications. Discussion Chatbot-related informational needs were consistent with existing self-management research, and many felt chatbots would be valuable if customizable and compatible with patient portals, pharmacies, or health apps. Conclusion Although most were not familiar with chatbots, patients were interested in interacting with them, but this varied. This research informs future design and functionalities of conversational interfaces to support hypertension self-management.

Postoperative pain, pain management, and recovery at home after pediatric tonsil surgery

Purpose To explore the severity and duration of postoperative pain, the management of analgesics, and postoperative recovery in children undergoing tonsil surgery. Method Participants included 299 children aged 4–17 years undergoing tonsillotomy ± adenoidectomy (TT ± A) or tonsillectomy ± adenoidectomy (TE ± A). Data were collected up to 12 days. The child rated pain on the Face Pain Scale-Revised (FPS-R) and recovery using the Postoperative Recovery in Children (PRiC) questionnaire. Caregivers assessed their child's pain, anxiety, and nausea on a numeric analog scale and kept a log of analgesic administration. Results High pain levels (FPS-R ≥ 4) were reported in all surgical and age groups (TT ± A age 4–11, TE ± A age 4–11, TE ± A age 12–17), but there were variations in pain intensity and duration within and between groups. The TE ± A group scored more days with moderate to very excruciating pain and lower recovery than the TT ± A group, with the worst outcomes reported by older TE ± A children. The majority of the children used paracetamol + COX-inhibitors at home, but regular administration of analgesics was lacking, particularly during late evening and at night. Few were received rescue medication (opioid or clonidine) despite severe pain. Physical symptoms and daily life activities were affected during the recovery period. There was moderate agreement between child and the caregiver’s pain assessment scores. Conclusion Children reported a troublesome recovery with significant postoperative pain, particularly older children undergoing tonsillectomy. Pain treatment at home was suboptimal and lacked regular analgesic administration. Patient information needs to be improved regarding the importance of regular administration of analgesics and rescue medication.

An evaluation of the information needs of radiotherapy patients and their families

Purpose: To evaluate the information needs of radiotherapy patients and their families. To explore influential factors regarding information-seeking behaviours. To identify the preferred formats of information and the optimum time for radiotherapy patients to receive information. To assess the implications for clinical practice in satisfying patient information needs. Method: A Cumulative Index to Nursing and Allied Health Literature database search of literature was undertaken and publications screened for retrieval with 36 qualifying for inclusion in the evaluation. Results: There was inconclusive evidence exploring the impact that patient age, diagnosis, family background, and educational status had on the information-seeking behaviours and preferences of cancer patients. There is an agreement that there are positive and negative benefits of using different formats of information: verbal, written, virtual, and so on, and ultimately healthcare providers must utilise a combination of information formats to satisfy the information needs and preferences of individual patients. Inconsistent data were found on the optimum time to deliver cancer information to patients and professionals, and therapeutic radiographers should not assume that their information priorities are the same as those of their patients—every patient has unique and individually specific information needs. Conclusion: The information needs of patients and families are dependent on individual circumstances, and priorities have a tendency to change during the cancer management journey, presenting huge challenges for therapeutic radiographers who are required to regularly reassess and satisfy the varying needs and preferences. More research is needed within the area of information needs and preferences for cancer patients receiving radiotherapy.

Information needs of older patients living with chronic obstructive pulmonary disease (COPD) indicated for a specific geriatric rehabilitation programme: a prospective cohort study

Background: Post-acute rehabiitation is recommended in the treatment of chronic obstructive pulmonary disease (COPD). It enhances the sense of control by education, which should focus on patient information needs. However, it is unknown whether a geriatric rehabilitation programme for older patients with advanced COPD and severely impaired health status (the GR-COPD programme) does fit these patient information needs. Objectives: The study aimed to identify the information needs of patients who were eligible for the GR-COPD programme, and investigated if health-related knowledge improved during rehabilitation. Methods: All patients indicated for the GR-COPD programme were eligible for this study. The information needs were measured with the Lung Information Needs Questionnaire (LINQ). Findings: The 158 patients (mean age 70.8 years; FEV1 %predicted: 35.5) showed relatively high baseline information needs (mean LINQ overall score: 8.6 [SD 3.1]), with the greatest need in the domains ‘diet’ and ‘self-management’. After follow-up, the mean LINQ overall score significantly improved in patients who completed the GR-COPD programme (p=0.001). Conclusion: Patients' knowledge showed a statistically significant improvement in some areas during the GR-COPD programme.

Stoma support garments: a survey on patient information needs, product selection and equity of provision

Many people with a stoma wear support garments, often a belt or underwear, to support the abdominal muscles, secure the stoma and conceal the appliance. There is some evidence that they reduce the risk of a parastomal hernia developing or getting worse. To investigate the experiences of UK adults living with a stoma regarding the use of support garments, a cross-sectional online survey was designed and distributed on social media and via a mailing list. The questionnaire was completed by 1528 people, 598 of whom answered a free-text question. These responses underwent thematic analysis. This article discusses the responses related to information provision, product selection and equity of provision, while separate articles discuss those related to the rationale for wearing stoma support garments. A third of respondents had not received any expert information on support garments and had to rely on their own research to make their selection. Of the 1004 who had received information, the main sources were stoma care nurses (73.4%), commercial suppliers (49.7%), peers (20.9%) and support groups (19.2%). Free-text comments indicated that respondents did not always feel they had been adequately counselled about support garments or shown the range available. Many respondents described restrictions being imposed on the number or range of products they could order. This study highlights the important role stoma care nursing specialists can play in assessment and review of support garments to ensure ostomates select the right product for their prescription.

Oncofertility Decision Support Resources for Women of Reproductive Age: Systematic Review

Background Cancer treatments have the potential to cause infertility among women of reproductive age. Many cancer patients do not receive sufficient oncofertility information or referrals to reproductive specialists prior to starting cancer treatment. While health care providers cite lack of awareness on the available oncofertility resources, the majority of cancer patients use the internet as a resource to find additional information to supplement discussions with their providers. Objective Our aim was to identify and characterize Web-based oncofertility decision aids and health education materials accessible for women of reproductive age with a diagnosis of any cancer. Methods We searched five databases and the gray literature for the years 1994-2018. The developer and content information for identified resources was extracted. Each resource underwent a quality assessment. Results We identified 31 open access resources including 4 decision aids and 27 health educational materials. The most common fertility preservation options listed in the resources included embryo (31/31, 100%), egg (31, 100%), and ovarian tissue freezing (30, 97%). Notably, approximately one-third (11, 35%) contained references and 5 (16%) had a reading level of grade 8 or below. Resources were of varying quality; two decision aids from Australia and the Netherlands, two booklets from Australia and the United Kingdom, and three websites from Canada and the United States rated as the highest quality. Conclusions This comprehensive review characterizes numerous resources available to support patients and providers with oncofertility information, counseling, and decision making. More focus is required to improve the awareness and the access of existing resources among patients and providers. Providers can address patient information needs by leveraging or adapting existing resources to support clinical discussions and their specific patient population.