I.M. Verdonck-de Leeuw

Touch screen computer-assisted health-related quality of life and distress data collection in head and neck cancer patients.

•u2002 Touch screen computer‐assisted health‐related quality of life data collection in head and neck cancer patients is feasible. •u2002 Touch screen computer‐assisted health‐related quality of life data collection can be used for scientific documentation as well as in clinical setting. •u2002 Patients are willing to complete the questionnaire on a touch‐screen and find the equipment easy to use. •u2002 Compliance needs improvement by instructing clinicians and nurses and a better alert system.

Item Reduction of the Voice Handicap Index Based on the Original Version and on European Translations

Objective: Constructing an internationally applicable short-scale of the Voice Handicap Index (VHI). Methods: Subjects were 1,052 patients with 5 different types of voice disorder groups from Belgium, France, Sweden, Germany, Italy, The Netherlands, Portugal, and the USA. Different 9- and 12-item subsets were selected from the 30 VHI items using (1) the first factor of an unrotated factor analysis (narrow range subsets) and (2) the first three factors after promax rotation (broad range subsets). Country-specific subsets were selected to test deviations from the international subsets. For all subsets, reliability was investigated using Cronbach’s alphas and correlations with the total VHI. Validity was investigated using regression on voice disorder groups. All analyses were performed for the total and for all country-specific subject samples. Results: Reliability was high for all item subsets. It was lower for the international compared to the country-specific subsets and for the broad range compared to the narrow range subsets. Validity was best for the broad range subsets. Validity was better for the international than for the country-specific subsets. For all statistics the 12-item subsets were not essentially better than the 9-item subsets. Conclusion: The international broad range 9-item subset forms a scale which approximates well the total VHI.

Coping with parental cancer: web-based peer support in children.

Objective: To investigate the use and content of web‐based peer support in children coping with parental cancer.

Patient-reported symptom questionnaires in laryngeal cancer: Voice, speech and swallowing

OBJECTIVESnTo validate questionnaires on voice, speech, and swallowing among laryngeal cancer patients, to assess the need for and use of rehabilitation services, and to determine the association between voice, speech, and swallowing problems, and quality of life and distress.nnnMATERIALS AND METHODSnLaryngeal cancer patients at least three months post-treatment completed the VHI (voice), SHI (speech), SWAL-QOL (swallowing), EORTC QLQ-C30, QLQ-HN35, HADS, and study-specific questions on rehabilitation.nnnRESULTSnEighty-eight patients and 110 healthy controls participated. Cut off scores of 15, 6, and 14 were defined for the VHI, SHI, and SWAL-QOL (sensitivity > 90%; specificity > 80%). Based on these scores, 56% of the patients reported voice, 63% speech, and 54% swallowing problems. VHI, SHI, and SWAL-QOL scores were associated significantly with quality of life (EORTC QLQ-C30 global quality of life scale) (r = .43 (VHI and SHI) and r = .46 (SWAL-QOL)) and distress (r = .50 (VHI and SHI) and r = .58 (SWAL-QOL)). In retrospect, 32% of the patients indicated the need for rehabilitation at time of treatment, and 81% of these patients availed themselves of such services. Post-treatment, 8% of the patients expressed a need for rehabilitation, and 20% of these patients actually made use of such services.nnnCONCLUSIONnPsychometric characteristics of the VHI, SHI, and SWAL-QOL in laryngeal cancer patients are good. The prevalence of voice, speech, and swallowing problems is high, and clearly related to quality of life and distress. Although higher during than after treatment, the perceived need for and use of rehabilitation services is limited.

Validity of Patient-Reported Swallowing and Speech Outcomes in Relation to Objectively Measured Oral Function Among Patients Treated for Oral or Oropharyngeal Cancer

The objective of this study was to test the construct validity of the patient-reported outcomes Swallowing Quality of Life Questionnaire (SWAL-QOL) and Speech Handicap Index (SHI) in relation to objectively measured oral function among patients treated for oral or oropharyngeal cancer. The study sample consisted of patients treated for oral or oropharyngeal cancer. Outcome measures were the SWAL-QOL and the SHI, and the Functional Rehabilitation Outcomes Grade (FROG), a test to measure oral and shoulder function. Spearman’s rank correlation coefficient was used to test associations between the SHI and SWAL-QOL scales, and the FROG scales. During a study period of 3xa0months, 38 patients (21 males, 17 females; mean age 54xa0years) were included who visited the outpatient clinic for follow-up care 6–155xa0months after surgical treatment (nxa0=xa014) or combined surgery and radiotherapy (nxa0=xa024) for oral (nxa0=xa021) or oropharyngeal cancer (nxa0=xa017). Most SWAL-QOL and SHI scales (except the SWAL-QOL Fatigue scale) correlated significantly with one or more FROG oral function scales. None of the SWAL-QOL and SHI scales correlated significantly with the FROG shoulder function scale. These results support the construct validity of the SWAL-QOL and SHI questionnaires for assessing speech and swallowing problems in daily life that are moderately but significantly related to oral function. A multidimensional assessment protocol is recommended for use in clinical practice and for research purposes for measuring oral function and swallowing- and speech-related problems in daily life among head and neck cancer patients.

Shared decision-making and providing information among newly diagnosed patients with hematological malignancies and their informal caregivers: Not "one-size-fits-all"

To optimize personalized medicine for patients with hematological malignancies (HM), we find that knowledge on patient preferences with regard to information provision and shared decision‐making (SDM) is of the utmost importance. The aim of this study was to investigate the SDM preference and the satisfaction with and need for information among newly diagnosed HM patients and their informal caregivers, in relation to sociodemographic and clinical factors, cognitive coping style, and health related quality of life.

Durable usage of patient-reported outcome measures in clinical practice to monitor health-related quality of life in head and neck cancer patients

PurposeTo investigate the long-term follow-up (5xa0years) of implementing patient-reported outcome measures (PROMs) in clinical practice to monitor health-related quality of life (HRQOL) in head and neck cancer (HNC) patients.MethodsA mixed method design was used. The usage rate of OncoQuest (a touch screen computer system to monitor HRQOL) and the subsequent nurse consultation was calculated among HNC patients who visited the outpatient clinic for regular follow-up, as well as differences between ever users and never users (sociodemographic and clinical characteristics). The content of the nurse consultation was investigated. Reasons for not using (barriers) or using (facilitators) OncoQuest and the nurse consultation were explored from the perspective of HNC patients, and of head and neck surgeons.ResultsUsage rate of OncoQuest was 67% and of the nurse consultation 79%. Usage of OncoQuest was significantly related to tumor subsite and tumor stage. Topics most frequently (>40%) discussed during the nurse consultation were global quality of life (97%), head and neck cancer related symptoms (82%), other physical symptoms such as pain (61%), and psychological problems such as anxiety (44%). Several barriers and facilitators to implement PROMs in clinical practice were reported by both patients and head and neck surgeons.ConclusionUsage of PROMs in clinical practice and a nurse consultation is durable, even 5xa0years after the introduction. This study contributes to better insight into long-term follow-up of implementation, thereby guiding future research and projects that aim to implement PROMs in clinical practice to monitor HRQOL among (head and neck) cancer patients.

The course of sexual interest and enjoyment in head and neck cancer patients treated with primary (chemo)radiotherapy

INTRODUCTIONnThe aim of this prospective study was to investigate the course of sexual interest and enjoyment in relation to sociodemographic and clinical factors, health-related quality of life (HRQOL), and symptoms of psychological distress in head and neck cancer (HNC) patients treated with primary (chemo)radiotherapy.nnnMETHODSnHNC patients (nu202f=u202f354) completed patient-reported outcome measures (PROMs) on HRQOL (EORTC QLQ-C30 and QLQ-H&N35, including the sexuality subscale covering less sexual interest and enjoyment), and psychological distress (HADS) pretreatment, at 6-week follow-up and at 3-, 6-, 12-, 18-, and 24-month follow-up (i.e., after treatment). Linear mixed models were used to analyze the course of sexuality from pretreatment to 24-month follow-up, and to investigate its relation to sociodemographic and clinical factors, HRQOL, and psychological distress as measured at baseline, and to investigate the course of sexuality from 6- to 24-month follow-up in relation to these factors measured at 6-month follow-up.nnnRESULTSnBefore start of treatment, 37% of patients reported having less sexuality, which increased to 60% at 6-week follow-up, and returned to baseline level from 12-month follow-up onwards. Older age (pu202f=u202f0.037) and trouble with social contact (pu202f<u202f0.001), weight loss (pu202f=u202f0.013), and constipation (pu202f=u202f0.041) before treatment were associated with less sexuality over time. Female gender (pu202f=u202f0.021) and poor social functioning (pu202f<u202f0.001) at 6-month follow-up were associated with less sexuality from 6- to 24-month follow-up.nnnDISCUSSIONnLess sexuality is often reported in HNC patients treated with (chemo)radiotherapy. Using PROMs in clinical practice may help identify patients who might benefit from supportive care targeting sexuality.