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1.
Support Care Cancer ; 29(10): 5763-5776, 2021 Oct.
Article in English | MEDLINE | ID: mdl-33738593

ABSTRACT

PURPOSE: The aim of this pretest-posttest study was to investigate the reach and effects of My Changed Body (MyCB), an expressive writing activity based on self-compassion, among head and neck cancer (HNC) survivors. METHODS: This pilot study had a pretest-posttest design. HNC survivors received an invitation to complete a baseline survey on body image-related distress. At the end of the survey, HNC survivors were asked if they were interested in the intervention study. This entailed the writing activity and a survey 1 week and 1 month post-intervention. The reach was calculated by dividing the number of participants in the intervention study, by the number of (1) eligible HNC survivors and (2) those who filled in the baseline survey. Linear mixed models were used to analyze the effect on body image-related distress. Logistic regression analysis was used to investigate factors associated with the reach and reduced body image-related distress. MyCB was evaluated using study-specific questions. RESULTS: The reach of MyCB was 15-33% (depending on reference group) and was associated with lower education level, more social eating problems, and fewer wound healing problems. Among the 87 participants, 9 (10%) showed a clinically relevant improvement in body image-related distress. No significant effect on body image-related distress was found. Self-compassion improved significantly during follow-up until 1 month post-intervention (p=0.003). Users rated satisfaction with MyCB as 7.2/10. CONCLUSION: MyCB does not significantly improve body image-related distress, but is likely to increase self-compassion, which sustains for at least 1 month.


Subject(s)
Body Image , Head and Neck Neoplasms , Head and Neck Neoplasms/therapy , Humans , Pilot Projects , Quality of Life , Survivors , Writing
2.
Eur J Cancer Care (Engl) ; 30(6): e13497, 2021 Nov.
Article in English | MEDLINE | ID: mdl-34339081

ABSTRACT

OBJECTIVE: The web-based application Oncokompas was developed to support cancer patients to self-manage their symptoms. This qualitative study was conducted to obtain insight in patients' self-management strategies to cope with cancer and their experiences with Oncokompas as a fully automated behavioural intervention technology. METHODS: Data were collected from semi-structured interviews with 22 participants (10 head and neck cancer survivors and 12 incurably ill patients). Interview questions were about self-management strategies and experiences with Oncokompas. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. RESULTS: Participants applied several self-management strategies, among which trying to stay in control and make the best of their situation. They described Oncokompas' added value: being able to monitor symptoms and having access to a personal online library. Main reasons for not using Oncokompas were concentration problems, lack of time or having technical issues. Recommendations were made for further development of Oncokompas, relating to its content, technical and functional aspects. CONCLUSIONS: Survivors and incurably ill patients use various self-management strategies to cope with cancer. The objectives of self-management interventions as Oncokompas correspond well with these strategies: taking a certain responsibility for your well-being and being in charge of your life as long as possible by obtaining automated information (24/7) on symptoms and tailored supportive care options.


Subject(s)
Head and Neck Neoplasms , Self-Management , Telemedicine , Humans , Qualitative Research , Quality of Life , Survivors
3.
Lancet Oncol ; 21(1): 80-94, 2020 01.
Article in English | MEDLINE | ID: mdl-31838009

ABSTRACT

BACKGROUND: Knowledge about the efficacy of behavioural intervention technologies that can be used by cancer survivors independently from a health-care provider is scarce. We aimed to assess the efficacy, reach, and usage of Oncokompas, a web-based eHealth application that supports survivors in self-management by monitoring health-related quality of life (HRQOL) and cancer-generic and tumour-specific symptoms and obtaining tailored feedback with a personalised overview of supportive care options. METHODS: In this non-blinded, randomised, controlled trial, we recruited patients treated at 14 hospitals in the Netherlands for head and neck cancer, colorectal cancer, breast cancer, Hodgkin lymphoma, or non-Hodgkin lymphoma. Adult survivors (aged ≥18 years) were recruited through the Netherlands Cancer Registry (NCR) and invited by their treating physician through the Patient Reported Outcomes Following Initial Treatment and Long term Evaluation of Survivorship (PROFILES) registry. Participants were randomly assigned (1:1) by an independent researcher to the intervention group (access to Oncokompas) or control group (access to Oncokompas after 6 months), by use of block randomisation (block length of 68), stratified by tumour type. The primary outcome was patient activation (knowledge, skills, and confidence for self-management), assessed at baseline, post-intervention, and 3-month and 6-month follow-up. Linear mixed models (intention-to-treat) were used to assess group differences over time from baseline to 6-month follow-up. The trial is registered in the Netherlands Trial Register, NTR5774 and is completed. FINDINGS: Between Oct 12, 2016, and May 24, 2018, 625 (21%) of 2953 survivors assessed for eligibility were recruited and randomly assigned to the intervention (320) or control group (305). Median follow-up was 6 months (IQR 6-6). Patient activation was not significantly different between intervention and control group over time (difference at 6-month follow-up 1·7 [95% CI -0·8-4·1], p=0·41). INTERPRETATION: Oncokompas did not improve the amount of knowledge, skills, and confidence for self-management in cancer survivors. This study contributes to the evidence for the development of tailored strategies for development and implementation of behavioural intervention technologies among cancer survivors. FUNDING: Dutch Cancer Society (KWF Kankerbestrijding).


Subject(s)
Cancer Survivors/psychology , Neoplasms/therapy , Patient Reported Outcome Measures , Quality of Life , Self-Management/methods , Telemedicine/methods , Telemedicine/statistics & numerical data , Aged , Female , Follow-Up Studies , Humans , Male , Middle Aged , Neoplasms/psychology , Neoplasms/rehabilitation , Prognosis , Self-Management/psychology , Surveys and Questionnaires , Survival Rate
4.
Support Care Cancer ; 28(1): 131-140, 2020 Jan.
Article in English | MEDLINE | ID: mdl-30993449

ABSTRACT

OBJECTIVES: To investigate among patients treated with a total laryngectomy (TL) (1) Internet-use and Internet use to search for information on health and cancer (content); (2) which patients are most likely to use the Internet in general, for health-related and cancer-related purposes; (3) which other types of eHealth (community, communication, care) are used; and (4) preferences towards future use. METHODS: Patient members of the Dutch TL patient society were asked to complete a questionnaire on Internet use, health-related and cancer-related Internet use, types of eHealth, preferences towards future use, socio-demographics, clinical factors, and quality of life (QOL). Factors associated with Internet use and health-related and cancer-related Internet use were investigated using stepwise logistic regression analysis. RESULTS: In total, 279 TL patients participated, of whom 68% used the Internet. Of these, 63% used the Internet to search for information on health and 49% on cancer. Younger and higher educated TL patients and those with better QOL used the Internet more often. Patients with worse QOL searched more often for health-related information. Younger patients and those with shorter time since TL searched more often for cancer-related information. The current use of eHealth for communication, community, and care purposes among Internet users was limited (range, 2 to 15%). Many were interested in using these types of eHealth in the future (range, 21 to 72%). CONCLUSION: The majority used the Internet, especially to search for information on health and cancer, but only few for communication, community, or care purposes. Many were interested in future use.


Subject(s)
Information Seeking Behavior , Internet/statistics & numerical data , Laryngeal Neoplasms , Laryngectomy , Patient Acceptance of Health Care/statistics & numerical data , Aged , Aged, 80 and over , Communication , Cross-Sectional Studies , Female , Humans , Laryngeal Neoplasms/epidemiology , Laryngeal Neoplasms/psychology , Laryngeal Neoplasms/therapy , Laryngectomy/rehabilitation , Laryngectomy/statistics & numerical data , Male , Middle Aged , Patient Acceptance of Health Care/psychology , Quality of Life , Social Support , Surveys and Questionnaires , Telemedicine/statistics & numerical data , Voice Quality
5.
BMC Palliat Care ; 18(1): 85, 2019 Oct 23.
Article in English | MEDLINE | ID: mdl-31647011

ABSTRACT

BACKGROUND: Patients with incurable cancer have to deal with a wide range of symptoms due to their disease and treatment, influencing their quality of life. Nowadays, patients are expected to adopt an active role in managing their own health and healthcare. Oncokompas is an eHealth self-management application developed to support patients in finding optimal palliative care, tailored to their quality of life and personal preferences. A randomized controlled trial will be carried out to determine the efficacy and cost-utility of Oncokompas compared to care as usual. METHODS: 136 adult patients with incurable lung, breast, colorectal and head and neck cancer, lymphoma and glioma, will be included. Eligible patients have no curative treatment options and a prognosis of at least three months. Patients will be randomly assigned to the intervention group or the control group. The intervention group directly has access to Oncokompas alongside care as usual, while the waiting list control group receives care as usual and will have access to Oncokompas after three months. The primary outcome measure is patient activation, which can be described as a patient's knowledge, skills and confidence to manage his or her own health and healthcare. Secondary outcome measures comprise self-efficacy, health-related quality of life, and costs. Measures will be assessed at baseline, two weeks after randomization, and three months after the baseline measurement. DISCUSSION: This study will result in knowledge on the efficacy and cost-utility of Oncokompas among patients with incurable cancer. Also, more knowledge will be generated into the need for and costs of palliative care from a societal and healthcare perspective. TRIAL REGISTRATION: Netherlands Trial Register identifier: NTR 7494 . Registered on 24 September 2018.


Subject(s)
Mobile Applications/standards , Neoplasms/therapy , Palliative Care/standards , Patient Preference/psychology , Adult , Clinical Protocols , Cost-Benefit Analysis/standards , Female , Health Services Accessibility , Humans , Male , Netherlands , Palliative Care/methods , Quality of Life/psychology , Self-Management/methods , Self-Management/psychology , Telemedicine
6.
Int J Cancer ; 143(4): 758-766, 2018 08 15.
Article in English | MEDLINE | ID: mdl-29492965

ABSTRACT

Salivary duct carcinoma (SDC) is a subtype of salivary gland cancer with a dismal prognosis and a need for better prognostication and novel treatments. The aim of this national cohort study was to investigate clinical outcome, prognostic factors, androgen receptor (AR) and human epidermal growth factor receptor 2 (HER2) expression. SDC patients diagnosed between 1990 and 2014 were identified by the Nationwide Network and Registry of Histo- and Cytopathology in the Netherlands (PALGA). Subsequently, medical records were evaluated and pathological diagnoses reviewed. Data were analyzed for overall survival (OS), disease-free survival (DFS), distant metastasis-free survival (DMFS) and prognostic factors. AR was evaluated by immunohistochemistry (IHC), HER2 by IHC and fluorescent in-situ hybridization. A total of 177 patients were included. The median age was 65 years, 75% were male. At diagnosis, 68% presented with lymph node metastases and 6% with distant metastases. Median OS, DFS and DMFS were 51, 23 and 26 months, respectively. In patients presenting without distant metastases, the absolute number of positive lymph nodes was associated with poor OS and DMFS in a multivariable analysis. AR and HER2 were positive in 161/168 (96%) and 44/153 (29%) tumors, respectively, and were not prognostic factors. SDC has a dismal prognosis with primary lymph node involvement in the majority of patients. The absolute number of lymph node metastases was found to be the only prognostic factor for DMFS and OS. AR expression and-to a lesser extent-HER2 expression hold promise for systemic treatment in the metastatic and eventually adjuvant setting.


Subject(s)
Carcinoma/pathology , Salivary Ducts/pathology , Salivary Gland Neoplasms/pathology , Adult , Aged , Aged, 80 and over , Carcinoma/surgery , Carcinoma/therapy , Chemoradiotherapy, Adjuvant , Disease-Free Survival , Factor Analysis, Statistical , Female , Humans , Lymphatic Metastasis , Male , Middle Aged , Neoplasm Metastasis , Netherlands , Palliative Care , Prognosis , Receptor, ErbB-2/metabolism , Receptors, Androgen/metabolism , Recurrence , Salivary Ducts/surgery , Salivary Gland Neoplasms/radiotherapy , Salivary Gland Neoplasms/surgery , Salivary Gland Neoplasms/therapy , Survival Rate
7.
Support Care Cancer ; 26(4): 1221-1231, 2018 Apr.
Article in English | MEDLINE | ID: mdl-29098402

ABSTRACT

PURPOSE: The aim of this study is to investigate the associations between patient activation and total costs in cancer patients treated with total laryngectomy (TL). METHODS: All members of the Dutch Patients' Association for Laryngectomees were asked to participate in this cross-sectional study. TL patients who wanted to participate were asked to complete a survey. Costs were measured using the medical consumption and productivity cost questionnaire and patient activation using the Patient Activation Measure (PAM). Sociodemographic and clinical characteristics were self-reported, and health status measured using the EQ-5D. The difference in total costs from a healthcare and societal perspective among four groups with different PAM levels were compared using (multiple) regression analyses (5000 bootstrap replications). RESULTS: In total, 248 TL patients participated. Patients with a higher (better) PAM (levels 2, 3, and 4) had a probability of 70, 80, and 93% that total costs from a healthcare perspective were lower than in patients with the lowest PAM level (difference €-375 to €-936). From a societal perspective, this was 73, 87, and 82% (difference €-468 to €-719). After adjustment for time since TL, education, and sex, the probability that total costs were lower in patients with a higher PAM level compared to patients with the lowest PAM level changed to 62-91% (healthcare) and 63-92% (societal). After additional adjustment for health status, the probability to be less costly changed to 35-71% (healthcare) and 31-48% (societal). CONCLUSIONS: A better patient activation is likely to be associated with lower total costs from a healthcare and societal perspective.


Subject(s)
Cost of Illness , Health Care Costs , Laryngeal Neoplasms/economics , Laryngeal Neoplasms/surgery , Laryngectomy/economics , Aged , Cross-Sectional Studies , Female , Humans , Laryngeal Neoplasms/psychology , Laryngectomy/psychology , Male , Netherlands , Patient Participation , Quality of Life , Socioeconomic Factors , Surveys and Questionnaires
8.
Eur Arch Otorhinolaryngol ; 275(1): 147-151, 2018 Jan.
Article in English | MEDLINE | ID: mdl-29086006

ABSTRACT

A newly proposed classification by the European Laryngological Society (ELS) of glottic lesions by narrow-band imaging (NBI) divides their vascular patterns into longitudinal and perpendicular ones. The latter are further subdivided into the wide and narrow patterns. The longitudinal, wide, and narrow patterns are characteristic of benign disease, papilloma, and malignancy, respectively. The aim of the study was to investigate the diagnostic effectiveness of the classification. Forty patients with glottic lesions underwent microlaryngoscopy. The vascular patterns of all vocal cords were defined with NBI. The affected vocal cords were histologically analysed and comprised the arm (A). Unaffected vocal cords were not histologically analysed but followed-up and comprised the arm (B) and were regarded as true negatives if no suspicious changes appeared during the follow-up. The vocal cords from the arm A were categorised into the benign and malignant group according to the histologic result. The ratio of vascular patterns was determined and the groups were statistically compared using the Chi-square test and Fisher's exact test. Perpendicular changes were observed in 36.6% (9/26) of benign diseases and in 100% (23/23) of cancer conditions (p < 0.001). Wide perpendicular changes appeared only in papillomas (6/6) while narrow ones mostly in malignancies (23/26) and also in benign conditions (3/26) (p < 0.001). The sensitivity, specificity, positive and negative predictive values, and accuracy were 100, 95, 88, 100 and 96%, respectively. The new ELS classification can be used effectively and safely to differentiate malignant from benign disease.


Subject(s)
Laryngeal Diseases/classification , Laryngoscopy , Narrow Band Imaging , Vocal Cords/diagnostic imaging , Adolescent , Adult , Aged , Aged, 80 and over , Child , Europe , Female , Follow-Up Studies , Humans , Laryngeal Diseases/diagnostic imaging , Male , Middle Aged , Prospective Studies , Sensitivity and Specificity , Societies, Medical , Vocal Cords/pathology , Young Adult
9.
Eur Arch Otorhinolaryngol ; 275(3): 783-794, 2018 Mar.
Article in English | MEDLINE | ID: mdl-29340771

ABSTRACT

BACKGROUND: Incidences of pharyngocutaneous fistulization (PCF) after total laryngectomy (TL) reported in the literature vary widely, ranging from 2.6 to 65.5%. Comparison between different centers might identify risk factors, but also might enable improvements in quality of care. To enable this on a national level, an audit in the 8 principle Dutch Head and Neck Centers (DHNC) was initiated. METHODS: A retrospective chart review of all 324 patients undergoing laryngectomy in a 2-year (2012 and 2013) period was performed. Overall PCF%, PCF% per center and factors predictive for PCF were identified. Furthermore, a prognostic model predicting the PCF% per center was developed. To provide additional data, a survey among the head and neck surgeons of the participating centers was carried out. RESULTS: Overall PCF% was 25.9. The multivariable prediction model revealed that previous treatment with (chemo)radiotherapy in combination with a long interval between primary treatment and TL, previous tracheotomy, near total pharyngectomy, neck dissection, and BMI < 18 were the best predictors for PCF. Early oral intake did not influence PCF rate. PCF% varied quite widely between centers, but for a large extend this could be explained with the prediction model. PCF performance rate (difference between the PCF% and the predicted PCF%) per DHNC, though, shows that not all differences are explained by factors established in the prediction model. However, these factors explain enough of the differences that, compensating for these factors, hospital is no longer independently predictive for PCF. CONCLUSIONS: This nationwide audit has provided valid comparative PCF data confirming the known risk factors from the literature which are important for counseling on PCF risks. Data show that variations in PCF% in the DHNCs (in part) are explainable by the variations in these predictive factors. Since elective neck dissection is a major risk factor for PCF, it only should be performed on well funded indication.


Subject(s)
Cutaneous Fistula/etiology , Laryngectomy , Pharyngeal Diseases/etiology , Postoperative Complications/etiology , Respiratory Tract Fistula/etiology , Adult , Aged , Cutaneous Fistula/epidemiology , Female , Humans , Incidence , Male , Medical Audit , Middle Aged , Neck Dissection/adverse effects , Outcome Assessment, Health Care , Pharyngeal Diseases/epidemiology , Pharyngectomy/adverse effects , Postoperative Complications/epidemiology , Respiratory Tract Fistula/epidemiology , Retrospective Studies , Risk Factors
10.
Eur Arch Otorhinolaryngol ; 274(4): 1967-1973, 2017 Apr.
Article in English | MEDLINE | ID: mdl-28004260

ABSTRACT

OBJECTIVE: In total laryngectomy, the neopharynx can be closed in several ways. It is suggested that a pseudo-diverticulum is seen more frequently in patients closed with vertical closure than with "T"-shaped closure, causing postoperative dysphagia. We report the results of patients treated with vertical closure and "T"-shaped closure with regard to the formation of a pseudo-diverticulum and postoperative dysphagia. METHODS: In our retrospective cohort study, we identified 117 consecutive laryngectomized patients treated in the VU University Medical Center of Amsterdam between March 2009 and December 2013. Evaluations with statistical analysis of postoperative outcome measures (the formation of a pseudo-diverticulum and dysphagia), qualitative and quantitative variables were conducted. RESULTS: Patient demographics were similar between the vertical-shaped closure and the "T"-shaped closure groups. In 84.6% of patients with vertical closure, a pseudo-diverticulum was seen compared to 18.5% with "T"-shaped closure (p < 0.001). Dysphagia was increasingly seen in patients with a pseudo-diverticulum (60.5%) compared to patients without a pseudo-diverticulum (39.5%) (p = 0.090). CONCLUSION: Formation of a pseudo-diverticulum is more frequently seen in laryngectomy patients closed with vertical closure than in patients closed with "T"-shaped closure of the neopharynx. It is favorable to implement "T"-shaped closure in laryngectomy.


Subject(s)
Deglutition Disorders/prevention & control , Diverticulum/prevention & control , Laryngectomy , Postoperative Complications/prevention & control , Suture Techniques/adverse effects , Wound Closure Techniques/adverse effects , Aged , Deglutition Disorders/etiology , Diverticulum/etiology , Female , Humans , Laryngeal Neoplasms/surgery , Laryngectomy/adverse effects , Laryngectomy/methods , Male , Middle Aged , Netherlands , Outcome and Process Assessment, Health Care , Postoperative Complications/surgery , Retrospective Studies
11.
BMC Cancer ; 16: 580, 2016 08 02.
Article in English | MEDLINE | ID: mdl-27484126

ABSTRACT

BACKGROUND: Total laryngectomy with or without adjuvant (chemo)radiation often induces speech, swallowing and neck and shoulder problems. Speech, swallowing and shoulder exercises may prevent or diminish these problems. The aim of the present paper is to describe the study, which is designed to investigate the effectiveness and cost-utility of a guided self-help exercise program built into the application "In Tune without Cords" among patients treated with total laryngectomy. METHODS/DESIGN: Patients, up to 5 years earlier treated with total laryngectomy with or without (chemo)radiation will be recruited for participation in this study. Patients willing to participate will be randomized to the intervention or control group (1:1). Patients in the intervention group will be provided access to a guided self-help exercise program and a self-care education program built into the application "In Tune without Cords". Patients in the control group will only be provided access to the self-care education program. The primary outcome is the difference in swallowing quality (SWAL-QOL) between the intervention and control group. Secondary outcome measures address speech problems (SHI), shoulder disability (SDQ), quality of life (EORTC QLQ-C30, QLQ-H&N35 and EQ-5D), direct and indirect costs (adjusted iMCQ and iPCQ measures) and self-management (PAM). Patients will be asked to complete these outcome measures at baseline, immediately after the intervention or control period (i.e. at 3 months follow-up) and at 6 months follow-up. DISCUSSION: This randomized controlled trial will provide knowledge on the effectiveness of a guided self-help exercise program for patients treated with total laryngectomy. In addition, information on the value for money of such an exercise program will be provided. If this guided self-help program is (cost)effective for patients treated with total laryngectomy, the next step will be to implement this exercise program in current clinical practice. TRIAL REGISTRATION: NTR5255 Protocol version 4 date September 2015.


Subject(s)
Deglutition Disorders/rehabilitation , Exercise Therapy/economics , Laryngectomy/adverse effects , Patient Education as Topic/methods , Self Care/methods , Speech Disorders/rehabilitation , Cost-Benefit Analysis , Deglutition Disorders/etiology , Female , Humans , Male , Patient Education as Topic/economics , Prospective Studies , Quality of Life , Research Design , Self Care/economics , Speech Disorders/genetics , Treatment Outcome
12.
Support Care Cancer ; 24(3): 1261-8, 2016 Mar.
Article in English | MEDLINE | ID: mdl-26306518

ABSTRACT

PURPOSE: The 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. METHODS: Health 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. RESULTS: HCPs 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. CONCLUSION: The online self-care education program ITwC supporting early rehabilitation was feasible in clinical practice. In general, TLPs were satisfied with the program.


Subject(s)
Health Literacy/methods , Laryngeal Neoplasms/surgery , Laryngectomy/rehabilitation , Patient Education as Topic/methods , Self Care/methods , Adult , Aged , Cross-Sectional Studies , Employment , Female , Humans , Internet , Male , Middle Aged , Patient Satisfaction/statistics & numerical data , Quality of Life , Surveys and Questionnaires
13.
Nutr Cancer ; 67(7): 1093-103, 2015.
Article in English | MEDLINE | ID: mdl-26317372

ABSTRACT

Patients with head and neck cancer (HNC) are at risk for undernutrition. Dietary counseling during treatment has positive effects on nutritional status and quality of life, however, the effects of dietary counseling started before initiation of treatment are currently unknown. Therefore we assessed the effect of early individualized dietary counseling (DC) on weight loss, major complications, and length of hospital stay (LOS) in patients with HNC. Ninety-five newly diagnosed HNC patients with (risk of) undernutrition receiving DC were compared to 95 matched HNC patients receiving usual nutritional care (UC). Difference in weight change over time was analyzed by generalized estimating equations (GEE). Differences in complications and LOS were studied by Pearson chi-squared and student's t-tests. Weight change between diagnosis and end of treatment was -6.0 ± 6.9% (DC) and -5.4 ± 5.7% (UC; GEE: -0.4kg, 95% confidence interval: -1.2 to 0.5; P = 0.44). Less DC patients experienced overall postoperative complications (44%/70%, P = 0.04). No effect on major postoperative or (chemo)radiotherapy complications or LOS was found. This study showed a lower prevalence of overall postoperative complications in HNC patients receiving DC but could not demonstrate an effect on weight loss, other complications, and LOS.


Subject(s)
Counseling/methods , Head and Neck Neoplasms/complications , Length of Stay , Nutritional Support/methods , Weight Loss , Aged , Chemoradiotherapy/adverse effects , Female , Head and Neck Neoplasms/therapy , Humans , Male , Middle Aged , Nutritional Status , Postoperative Complications/diet therapy , Postoperative Complications/prevention & control , Precision Medicine/methods , Treatment Outcome
14.
Folia Phoniatr Logop ; 67(4): 193-201, 2015.
Article in English | MEDLINE | ID: mdl-26771305

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) tracheostomy 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.


Subject(s)
Internet , Laryngeal Neoplasms/surgery , Laryngectomy/rehabilitation , Self Care , Software , Therapy, Computer-Assisted , Aged , Community-Based Participatory Research , Female , Focus Groups , Humans , Laryngeal Neoplasms/rehabilitation , Larynx, Artificial , Male , Middle Aged , Needs Assessment , Olfaction Disorders/rehabilitation , Postoperative Complications/rehabilitation , Quality Assurance, Health Care , Speech Therapy , Speech, Alaryngeal/methods , Tracheostomy/rehabilitation , Video Recording
15.
Ned Tijdschr Geneeskd ; 1682024 03 05.
Article in Dutch | MEDLINE | ID: mdl-38512235

ABSTRACT

This clinical lesson describes three patients with problems after a total laryngectomy. Patient A suffered from acute tracheitis and narrowing of the tracheostoma. Patient B experienced acute dyspnea due to thick mucus plugs. Patient C had progressive symptoms of deteriorating speech and dysphagia, which resolved after dilatation of a pharyngeal stenosis. A total laryngectomy leads to definitive changes in anatomy and physiology. In case of respiratory symptoms, it is important to recognize the tracheostoma is the only entrance to the airway. Speech is generally well rehabilitated with a speech valve in a tracheoesophageal fistula.


Subject(s)
Deglutition Disorders , Laryngectomy , Humans , Laryngectomy/adverse effects , Dyspnea
16.
Oral Oncol ; 149: 106677, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38142550

ABSTRACT

OBJECTIVE: The aim of this project is to create an interactive online patient decision aid (PDA) for oropharyngeal cancer (OPSCC) patients, eligible for transoral (robotic) surgery with an ultimate goal to assist both physicians and patients in making treatment choices. MATERIALS AND METHODS: Following the International Patient Decision Aid Standards, a mixed-methods approach was employed. The study involved semi-structured in-depth interviews with patients and physicians, thinking-out-loud sessions, and study-specific questionnaires. Thematic coding and analysis were conducted on verbatim transcriptions of audio-recorded interviews. RESULTS: The PDA drafts were evaluated by twenty OPSCC survivors and twenty multidisciplinary specialists. Significant revisions were made after phase 1 to enhance readability and reduce text, whilst incorporating videos and graphics. Following all phases, both patients and specialists rated the PDA as comprehensible, feasible, and a valuable addition to regular counseling. CONCLUSION: This study showcases the development of a PDA for early stage oropharyngeal cancer patients considering surgery and radiotherapy options. The decision aid emphasizes the disparities in short- and long-term side effects between the two treatments. Patients and physicians found the decision aid to be understandable, user-friendly, and helpful for future patients. The PDA is available on https://beslissamen.nl/.


Subject(s)
Carcinoma , Oropharyngeal Neoplasms , Robotic Surgical Procedures , Humans , Netherlands , Oropharyngeal Neoplasms/surgery , Oropharyngeal Neoplasms/radiotherapy , Decision Support Techniques
17.
Laryngoscope ; 2024 Feb 17.
Article in English | MEDLINE | ID: mdl-38366759

ABSTRACT

OBJECTIVES: Decision-making for patients with a locally advanced laryngeal carcinoma (T3 and T4) is challenging due to the treatment choice between organ preservation and laryngectomy, both with different and high impact on function and quality of life (QoL). The complexity of these treatment decisions and their possible consequences might lead to decisional conflict (DC). This study aimed to explore the level of DC in locally advanced laryngeal carcinoma patients facing curative decision-making, and to identify possible associated factors. METHODS: In this multicenter prospective cohort study, participants completed questionnaires on DC, level of shared decision-making (SDM), and a knowledge test directly after counseling and 6 months after treatment. Descriptive statistics and Spearman correlation tests were used to analyze the data. RESULTS: Directly after counseling, almost all participants (44/45; 98%) experienced Clinically Significant DC score (CSDC >25, scale 0-100). On average, patients scored 47% (SD 20%) correct on the knowledge test. Questions related to radiotherapy were answered best (69%, SD 29%), whilst only 35% (SD 29%) of the questions related to laryngectomy were answered correctly. Patients' perceived level of SDM (scale 0-100) was 70 (mean, SD 16.2), and for physicians this was 70 (SD 1.7). CONCLUSION: Most patients with advanced larynx cancer experience high levels of DC. Low knowledge levels regarding treatment aspects indicate a need for better patient counseling. LEVEL OF EVIDENCE: Level IV Laryngoscope, 2024.

19.
Curr Opin Otolaryngol Head Neck Surg ; 31(2): 105-110, 2023 Apr 01.
Article in English | MEDLINE | ID: mdl-36912222

ABSTRACT

PURPOSE OF REVIEW: The brachial plexus is an important anatomical structure that is regularly encountered by head and neck surgeons and radiation oncologists. Surgical or radiation-induced brachial plexus injury have great impact on arm function and quality of life. Anatomical variations and management of the brachial plexus in head and neck cancer treatment are discussed. RECENT FINDINGS: The brachial plexus consists of spinal roots from C5-C8 and T1. The most prevalent anatomical variations in brachial plexus anatomy include the prefixed brachial plexus (additional contribution from C4) in 11%, the roots of C5 and C6 piercing the belly of the anterior scalene muscle in 6.8%, and presence of the scalenus minimus muscle in 4.1-46%. Due to its location, the brachial plexus is at risk of inadvertent division or neuropraxia during surgical procedures such as neck dissection or robot-assisted transaxillary thyroid surgery (RATS). In case of inadvertent division, nerve reconstruction surgery is warranted and may lead to improved function. The risk of radiation-induced brachial plexus injury is dose-dependent and occurs in approximately 12-22%. Currently, no successful treatment options exist for radiation-induced injury. SUMMARY: Knowledge of anatomical variations is important for head and neck surgeons to minimize the risk of brachial plexus injury. Limiting radiation therapy dose to the brachial plexus is desirable to decrease the risk of brachial plexus injury.


Subject(s)
Brachial Plexus , Head and Neck Neoplasms , Peripheral Nerve Injuries , Radiation Injuries , Humans , Quality of Life , Brachial Plexus/anatomy & histology , Brachial Plexus/injuries , Neck Muscles
20.
Support Care Cancer ; 20(11): 2925-31, 2012 Nov.
Article in English | MEDLINE | ID: mdl-22395211

ABSTRACT

PURPOSE: The 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. METHODS: Sixty-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). RESULTS: Tumor 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. CONCLUSIONS: Monitoring 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.


Subject(s)
Deglutition Disorders/etiology , Head and Neck Neoplasms/pathology , Quality of Life , Speech Disorders/etiology , Adult , Aged , Aged, 80 and over , Ambulatory Care , Deglutition Disorders/diagnosis , Diagnosis, Computer-Assisted/methods , Feasibility Studies , Female , Follow-Up Studies , Head and Neck Neoplasms/therapy , Humans , Male , Middle Aged , Outcome Assessment, Health Care , Prospective Studies , Psychiatric Status Rating Scales , Speech Disorders/diagnosis , Stress, Psychological/etiology , Surveys and Questionnaires
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