The background and purpose of this paper is to investigate adherence, exercise performance levels and associated factors in head and neck cancer (HNC) patients participating in a guided home-based prophylactic exercise program during and after treatment [swallowing sparing intensity modulated radiation therapy (SW-IMRT)]. Fifty patients were included in the study. Adherence was defined as the percentage of patients who kept up exercising; exercise performance level was categorized as low: ≤1, moderate: 1–2, and high: ≥2 time(s) per day, on average. Associations between 6- and 12-week exercise performance levels and age, gender, tumour site and stage, treatment, intervention format (online or booklet), number of coaching sessions, and baseline HNC symptoms (EORTC-QLQ-H&N35) were investigated. Adherence rate at 6 weeks was 70% and decreased to 38% at 12 weeks. In addition, exercise performance levels decreased over time (during 6 weeks: 34% moderate and 26% high; during 12 weeks: 28% moderate and 18% high). The addition of chemotherapy to SW-IMRT [(C)SW-IMRT] significantly deteriorated exercise performance level. Adherence to a guided home-based prophylactic exercise program was high during (C)SW-IMRT, but dropped afterwards. Exercise performance level was negatively affected by chemotherapy in combination with SW-IMRT.
PurposeThe purpose of this study was to investigate the feasibility of an online self-care education program supporting early rehabilitation of patients after total laryngectomy (TLPs) and factors associated with satisfaction.MethodsHealth care professionals (HCPs) were invited to participate and to recruit TLPs. TLPs were informed on the self-care education program “In Tune without Cords” (ITwC) after which they gained access. A study specific survey was used (at baseline T0 and postintervention T1) on TLPs’ uptake. Usage, satisfaction (general impression, willingness to use, user-friendliness, satisfaction with self-care advice and strategies, Net Promoter Score (NPS)), sociodemographic, and clinical factors were analyzed.ResultsHCPs of 6 out of 9 centers (67 % uptake rate) agreed to participate and recruited TLPs. In total, 55 of 75 TLPs returned informed consent and the baseline T0 survey and were provided access to ITwC (73 % uptake rate). Thirty-eight of these 55 TLPs used ITwC and completed the T1 survey (69 % usage rate). Most (66 %) TLPs were satisfied (i.e., score ≥7 (scale 1–10) on 4 survey items) with the self-care education program (mean score 7.2, SD 1.1). NPS was positive (+5). Satisfaction with the self-care education program was significantly associated with (higher) educational level and health literacy skills (P = .004, P = .038, respectively). No significant association was found with gender, age, marital status, employment status, Internet use, Internet literacy, treatment modality, time since total laryngectomy, and quality of life.ConclusionThe online self-care education program ITwC supporting early rehabilitation was feasible in clinical practice. In general, TLPs were satisfied with the program.
BackgroundDuring a 6-week course of (chemo)radiation many head and neck cancer patients have to endure radiotherapy-induced toxicity, negatively affecting patients’ quality of life. Pretreatment counseling combined with self-help exercises could be provided to inform patients and possibly prevent them from having speech, swallowing, and shoulder problems during and after treatment.ObjectiveOur goal was to investigate the feasibility of a multimodal guided self-help exercise program entitled Head Matters during (chemo)radiation in head and neck cancer patients.MethodsHead and neck cancer patients treated with primary (chemo)radiation or after surgery were asked to perform Head Matters at home. This prophylactic exercise program, offered in three different formats, aims to reduce the risk of developing speech, swallowing, shoulder problems, and a stiff neck. Weekly coaching was provided by a speech and swallowing therapist. Patients filled out a diary to keep track of their exercise activity. To gain insight into possible barriers and facilitators to exercise adherence, reports of weekly coaching sessions were analyzed by 2 coders independently.ResultsOf 41 eligible patients, 34 patients were willing to participate (83% uptake). Of participating patients, 21 patients completed the program (64% adherence rate). The majority of participants (58%) had a moderate to high level of exercise performance. Exercise performance level was not significantly associated with age (P=.50), gender (P=.42), tumor subsite (P=1.00) or tumor stage (P=.20), treatment modality (P=.72), or Head Matters format (Web-based or paper) (P=1.00). Based on patients’ diaries and weekly coaching sessions, patients’ perceived barriers to exercise were a decreased physical condition, treatment-related barriers, emotional problems, lack of motivation, social barriers, and technical problems. Patients’ perceived facilitators included an increased physical condition, feeling motivated, and social and technical facilitators.ConclusionsHead Matters, a multimodal guided self-help exercise program is feasible for head and neck cancer patients undergoing (chemo)radiation. Several barriers (decreased physical condition, treatment-related barriers) and facilitators (increased physical condition, feeling motivated) were identified providing directions for future studies. The next step is conducting a study investigating the (cost-)effectiveness of Head Matters on speech, swallowing, shoulder function, and quality of life.
PurposeThe purpose of this study is to evaluate computerized monitoring of speech and swallowing outcomes and its impact on quality of life (QoL) and emotional well-being in head and neck cancer patients in an outpatient clinic.MethodsSixty-seven patients, treated by single or multimodality treatment, completed the EORTC QLQ-C30 and QLQ-H&N35 questionnaires and the Hospital Anxiety and Depression Scale in an outpatient clinic, using a touch screen computer system (OncoQuest), at baseline (at time of diagnosis) and first follow-up (1 month after end of treatment).ResultsTumor sites included oral cavity (n = 12), oropharynx (n = 18), hypopharynx (n = 8), and larynx (n = 29). Tumor stage included carcinoma in situ (n = 3), stage I (n = 21), stage II (n = 7), stage III (n = 15), and IV (n = 21). No speech or swallowing problems at baseline or follow-up were noted in 23 % (speech) and 41 % (swallowing) of patients. Twenty-one percent (speech) and 19 % (swallowing) had problems at baseline and returned to normal scores at follow-up, while 16 % (speech) and 19 % (swallowing) had normal scores at baseline and developed problems at follow-up. Forty percent (speech) and 21 % (swallowing) had persistent problems from baseline to follow-up. At baseline, speech problems were significantly related to tumor site and emotional distress. At baseline and follow-up, swallowing problems were significantly related to QoL and emotional distress. At follow-up, speech problems were significantly related to QoL, emotional distress, and swallowing problems.ConclusionsMonitoring speech and swallowing problems through OncoQuest in an outpatient clinic is feasible. Many patients report speech and swallowing problems, negatively affecting their QoL and emotional well-being.
ostomy care, (3) voice prosthesis care, (4) speech rehabilitation, (5) smell rehabilitation, and (6) mobility of head, neck, and shoulder muscles. Expert users expressed concerns regarding tailored exercises, indicated a positive intent to implement the intervention in routine care, and expressed a need for guidance when implementing the intervention. End users and expert users appreciated the content completeness and multimedia-based information built into the application. Conclusion: The participatory design is a valuable approach to develop a self-care program to help meet users' needs. IntroductionFollowing total laryngectomy, patients can encounter challenges while returning home [1,2] . Changes in altered airway, swallowing, taste, loss of voice and nasal function, difficulties in neck and shoulder movement, Key WordsLaryngeal cancer · Total laryngectomy · Self-care · E-health · Usability testing · Participatory design approach Abstract Aim: To develop a Web-based self-care program for patients after total laryngectomy according to a participatory design approach. Methods: We conducted a needs assessment with laryngectomees (n = 9) and their partners (n = 3) by means of a focus group interview. In 4 focus group sessions, a requirement plan was formulated by a team of health care professionals (n = 10) and translated into a prototype. An e-health application was built including illustrated information on functional changes after total laryngectomy as well as video demonstrations of skills and exercises. Usability of the prototype was tested by end users (n = 4) and expert users (n = 10). Interviews were held to elicit the intention to use and the desired implementation strategy. Results: Six main self-care topics were identified: (1) nutrition, (2) trache- and social embarrassment have a profound effect on a patient's quality of life [3,4] .Self-management skill training is a critical element of rehabilitation, and is necessary in order to encourage patients to learn and apply new self-care skills [5] . The information and support needs of laryngectomees during the transition from hospital to home are extensive [6] . Meeting these needs is a complex task for health care professionals [7] . Providing e-health (using information and communication technology, especially the Internet, to improve health care [8] ) has the potential to be (cost-)effective, to improve quality of life, and to have beneficial effects on health literacy, decision-making, health care participation, psychological well-being, and physical activity levels [9,10] . Alongside usual care for laryngectomees, e-health offers an innovative approach to promote self-care education [11] and has great potential to enhance recovery, improving hospital-to-home transition, accessibility of supportive care [12] , and reintegration into the community [2] . However, to our knowledge there are no Web-based self-care programs for patients after total laryngectomy.The overall aim of this study was to develop and test the usability of a Web-based self-care...
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