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A patient-reported outcome measure to measure supportive care needs among head and neck cancer patients
 

Introduction
The 34-item Short-Form Supportive Care Needs Survey (SCNS-SF34) is a patient-reported outcome measure developed to gain insight into supportive care needs of cancer patients, including physical and daily living, psychological, sexuality, patient care and support and health system and information needs. For use in conjunction with the SCNS-SF34, we recently developed a module (SCNS-HNC) to measure supportive care needs specific for head and neck cancer patients (e.g. need for help with difficulty speaking or problems with chewing and/or swallowing).


Objectives
The goal of this study was to investigate the psychometric properties (i.e. internal consistency, validity and test-retest reliability) of the Dutch version of the SCNS-SF34 and SCNS-HNC in head and neck cancer patients.


Method
Head and neck cancer (HNC) patients were included from two cross-sectional studies. A total of  201 HNC patients completed the SCNS-SF34 and SCNS-HNC and several other patient-reported outcome measures at a single point in time. Using this data the factor structure, internal consistency and construct validity of the SCNS-SF34 and SCNS-HNC was assessed. A subset of patients (n = 110) completed the SCNS-SF34 and SCNS-HNC a second time to assess test-retest reliability.


Results
Content validity of the SCNS-HNC was good, although some HNC-topics were missing. For the SCNS-SF34 a 4-factor structure was found: physical & daily living, psychological, sexuality and health system, information & patient support (alpha=.79 to .95). For the SCNS-HNC a 2-factor structure was found: HNC-specific functioning and lifestyle (alpha=.89 and .60). Construct validity of the SCNS-SF34 and SCNS-HNC was also found to be good; respectively 96% and 89% of the hypothesised correlations between the SCNS-SF34 or SCNS-HNC and other patient-reported outcome measures were found (57% and 67% also showed the hypothesised magnitude). The SCNS-SF34 domains discriminated between treatment procedure (physical & daily living: p=.02 and psychological: p=.01) and time since treatment (health system, information & patient support: p=.02). Test-retest reliability of SCNS-SF34 and SCNS-HNC domains and HNC-specific functioning domain were in general good (ICC=.67 to .83). Floor effects ranged from 21.1% to 70.9%.


Conclusions
The SCNS-SF34 and SCNS-HNC are valid and reliable patient-reported outcome measures to evaluate the need for supportive care among (Dutch) HNC patients.


Funding
Dutch Cancer Society/Alpe d’HuZes Foundation


Staff
PhD student
F. Jansen MSc, Health scientist and epidemiologist, dpt. Otolaryngology-Head and Neck Surgery, VUmc.
Project leader
Prof I.M. Verdonck-de Leeuw, PhD, Psychologist, Speech and Language Therapist, Linguïst, dpt. Otolaryngology-Head and Neck Surgery, VUmc.
Project team
Prof C.R. Leemans, PhD MD, Head & Neck Surgeon, ENT-specialist, dpt. Otolaryngology-Head&Neck Surgery, VUmc.
Dr. C.F. van Uden-Kraan, PhD, Communication Scientist, dpt. of Otolaryngology-Head & Neck Surgery, VUmc
Dr. B.I. Witte PhD, biostatistician, dpt of Epidemology and Biostatistics
A.M. Braspenning, Health scientist


Questions?
For questions, please contact:
Femke Jansen
E-mail: f.jansen1@vumc.nl

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News flashes

 

Treatment of psychological distress in patients with head and neck or lung cancer cost-effective.
A recent study of PhD-student Femke Jansen and colleagues, recently published in the Journal of Clinical Oncology

 

PhD thesis Nadine Köhle

December 15, 2016 Nadine Köhle defended her PhD thesis "Hold on, for each other. Supporting partners of cancer patients via eHealth and positive psychology". 

 

PhD thesis Anne-Marie Krebber

December 2, 2016 Anne-Marie Krebber defended her PhD thesis "Stepped care targeting psychological distress in head and neck cancer and lung cancer patients".

 

PhD thesis Nadia van der Spek

September 7, 2016, Nadia van der Spek defended her PhD thesis "Meaning-centered group psychotherapy for cancer survivors: development, efficacy, and cost-utility". 

 

EORTC QLG Newsletter Spring 2016
The EORTC QLG  Spring Meeting took place on April 20th and 21th 2016 in Oslo. The Spring newsletter of the EORTC QLG is now available. 

PhD thesis Ingrid Cnossen

April 12, 2016, Ingrid Cnossen defended her PhD thesis entiteld “Self-management Supporting Rehabilitation in Head and Neck Cancer Patients”. 

 

VU/VUmc and Red-kite sign agreement for the provision of the Oncokompas in healthcare.

The VU University Amsterdam and VUmc Cancer Center Amsterdam work with Red-kite, distributor of software for hospitals in Netherlands. (November 3, 2015)

 

PhD thesis Christine van Gogh

December 4, 2015, Christine van Gogh defended her PhD thesis entiteld “Functional outcome of early glottic cancer”. 

Book presentation

On June 15th, 2015, Irma Verdonck presented the book "In Tune Without Cords" (in Dutch: VerderZonderStembanden) to Rob Burdorf, the president of the patient society for patients after laryngectomy.

 

PhD thesis Florien Boele

May 11 Florien Boele defended her PhD thesis, entitled "Towards improving health-related quality of life in glioma patients and their informal caregvers".

 

PhD thesis Trille Kristina Kjaer

May 8, Trille Kjaer will defend her PhD thesis entitled "Late effects after treatment of head and neck cancer and use of patient reported outcomes in clinical practice." Irma Verdonck is member of the committee.

 

Niels Stensen Fellowship
Florien Boele has received a Niels Stensen Fellowship. This is a scholarship that is awarded annually to a number of outstanding researchers who have recently obtained their PhD degree, to gain working experience abroad. Florien Boele will go to Pittsburgh (United States) and Edinburgh (Scotland) in 2015 and 2016.
 

Key paper

The publication “Prevalence of depression in cancer patients: a meta-analysis of diagnostic interviews and self-report instruments” of A.M.H. Krebber et.al is chosen by the Editors as one of the key papers in Psycho-oncology, (issue June 2014).

 

On April 10th, 2014, the first edition of the Value Based Healthcare Prize took place. The prize for the most exceptional initiative in collaborations went to Jippa, a collaborative by VUmc, CZ, Radboud UMC and Tilburg University.

 

In November 2013 the NVPO organised the International Congress "Innovation in Psycho-Oncology". The researchgroup held several presentations and posters.

 

Interested in oncological care chain? Come 2 October 2013 to the 3rd MuON symposium in hospital Gelderse Vallei. Keynote speaker Michel van Schaik (Director Rabobank) about Innovation in the care!

 

12 april 2013: KWF Kankerbestrijding / Alpe d’HuZes has granted the research proposal Netherlands Quality of life and Biomedical Cohort Studies in Cancer (NET-QUBIC).

Marieke de Bruijn will defend her PhD thesis on 10 juni 2013 at 15.45 pm.

Support our bicycle team for Alpe d'HuZes 2013!

On 6 June 2013 our team living together with cancer will cycle the Alpe d'HuZes! This in the fight against cancer. At this moment there is already more than 1500 euro donated. Do you support us too?

 

The 15th World Congress of Psycho-Oncology and Psychosocial Academy will be held in Rotterdam, 4-8 November 2013. www.ipos-society.org/ipos2013/.

 

29 January 2013. Pink Ribbon has granted a project to develop and evaluate an online training for cancer patients with insomnia (Annemieke van Straten), and a project to develop and evaluate a breast cancer module for the OncoKompas (Nelly van Uden).

 

Charity Symposium "Living with cancer"

On December 19, 2012 there will be a Symposium ''Living with Cancer''. This is a charity symposium on meaning centered psychotherapy for cancer patients. Read more about it at the tab News at the left.

 

15 November 2012: Hoe?Zo! Radio interview with Irma Verdonck on stress and cancer.

 

October 2012: Interview with Irma Verdonck in Psychologie Magazine.

 

September 9, 2012. Interview Hans van Willigenburg with Irma Verdonck on Radio 5.

 

August 2012. Five students finish their MSc thesis and graduate as MSc in Clinical PSychology.

 

June 28-30, 2012: International symposium on Supportive Care in Cancer (MASCC ISOO) at New York. Kevin Yap and Irma Verdonck organise a workshop on e-health and supportive care.

 

Record for Alpe d'HuZes 2012. The sponsor action Alpe d'HuZes (6 and 7 June) 2012 has already yielded the record amount of 28.5 million euros.

 

June 6-8, 2012: Our research group contributes to Alpe d'HuZes as volunteers.

 

April 20, 2012: Nelly van Uden will give a presentation about OncoKompas at a conference about  ICT in health care in Barcelona.

 

March 16, 2012: NVPO congress in Utrecht, we contribute with 2 oral and 2 poster presentations and a workshop.

 

January 1, 2012: The project POLARIS project has officially started.

 

December 22, 2011: Radio program DeGids.fm, Felix Meurders interviews Corien Eeltink on sexuality and cancer. 

 

November 2, 2011: KWF / Alpe d'HuZes funds a grant for the development and evaluation of an online intervention for informal caregivers of cancer patients.

 

October 30, 2011 In the national television program "Gesprek op 2", Daphne Bunskoek interviewed Irma Verdonck on living with cancer.

 

October 28, 2011: www.oncokompas.nl is online!

 

October 23, 2011: Alpe d'HuZes hands over more than 20 million euros to the Dutch Cancer Society!

 

 

Team work

Our research projects are embedded in the two largest research institutes of VU University in Amsterdam: VUmc CCA-VICI (Cancer Center Amsterdam) www.vumc.nl/afdelingen/CCA-V-ICI/ and EMGO+ (Institute for Health and Care Research emgo.nl

We work closely with patients and their caregivers and with researchers and physicians at VU University and VU University Medical Center in Amsterdam and other research institutes and hospitals in the Netherlands and worldwide. Team work is crucial  improving research and translating results into clinical practice.

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