The extent of Patients’ Positivity, Appearance Adjustment and Quality of Life following treatment for Head and Neck Cancer: An exploratory study

Background: Facial disfigurement is considered to be one of the most distressing aspects of head and neck cancer (HNC) and its treatment, but it has been the focus of little systematic study.  However there is a growing body of literature supporting the suggestion that such a stressful event may be a catalyst for positive psychosocial changes.  To date there are no existing studies looking at the relationship between quality of life (QoL), sense of appearance and positivity in this patient group.

Aim: To investigate how HNC affect patients’ QoL, sense of appearance and positivity.

Method: A Questionnaire battery containing the Medical Outcomes Short Form 12 (SF-12), Derriford Appearance Scale (DAS24) and Silver Lining Questionnaire (SLQ) was sent to 1,571 patients treated by the Maxillofacial Department in 2009.  The same measures with the inclusion of the University of Washington QoL Questionnaire (UoW), were posted to 299 HNC patients.  The study compares the Maxillofacial patients and HNC patients with reference data and explores associations with clinical factors.

Results: Reasons for non-completion of the questionnaires was given by a 118 patients.  Two hundred and thirty nine (15%) of the Maxillofacial patients and one hundred and thirty two (44%) of the HNC patients returned questionnaires.

The HNC patients had reported less distress and dysfunction related to appearance than age and gender matched norms.  They had similar QoL to other reported HNC patients, but worse than an age matched norm group.  Tumour stage was the only demographic to reveal a difference in relation to appearance.  The HNC patients also reported having a greater sense of positivity than the maxillofacial group and a similar level to previous data collected on lung cancer patients.

The complexity of the patient cohort has introduced many confounding variables, and the number of completed questionnaires was insufficient to identify the significance factors related to the data obtained on the measures.  Although there are indications that age and cancer staging may be particularly important.

Conclusions: The data collected in this study suggests that appearance issues are of less concern to HNC patients than the general population, and that they appear to be more positive, but further research is needed to investigate individual differences allowing for all the confounding variables.  Allowing for the lack of significant findings, we posit some hypotheses that would merit further investigation.  We also suggests that a follow up study, using the same validated questionnaires, over an extended patient group and longitudinally, may be able to identify significant co-variables. This may in turn inform the provision of support and information for patients to aid them in their difficult time.

Entitled: The performance of junior doctors in applying clinical pharmacology knowledge and prescribing skills to standardised clinical cases. This paper builds on the fact that safe prescribing is a core competency in undergraduate medical education. That a large proportion of undergraduate medical students and recently graduated doctors in the UK are not confident in their ability to effectively and safely prescribe and that errors are common in all healthcare settings and prescribing errors are the most common type.

This study produced twelve valid and statistically reliable assessments of Clinical Pharmacology and Therapeutics (CPT) knowledge and prescribing skills in areas that pose a high risk to patient safety. The findings show that a large proportion of Foundation Year 1 (FY1) doctors fail to demonstrate the level of CPT knowledge and prescribing ability judged by a subject matter expert (SME) panel to be required at this stage of their careers. My co-authors (Prof Nicky Britten & Dr David Bristow) suggest strategies and areas where teaching can be focused to improve the safety and effectiveness of FY1 doctors’ prescribing.

If this is an area of interest then below is the abstract related to the article and a link to the journal.

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Aims

Recent studies suggest a worryingly high proportion of final year medical students and new doctors feel unprepared for effective and safe prescribing.  Little research has been undertaken on UK junior doctors to see if these perceptions translate into unsafe prescribing practice.  We aimed to measure the performance of foundation year 1 (FY1) doctors in applying clinical pharmacology and therapeutics (CPT) knowledge and prescribing skills using standardised clinical cases.

Methods

A subject matter expert (SME) panel constructed a blueprint and from this twelve assessments focussing on areas posing high risk to patient safety and deemed as essential for FY1 doctors to know. Assessments comprised six Extended Matching Questions (EMQ) and six Written Unobserved Structured Clinical Examinations (WUSCE) covering seven CPT domains.  Two of each assessment types were administered over three time points to 128 FY1 doctors.

Results

The twelve assessments were valid and statistically reliable. Across seven CPT areas tested 51-75% of FY1 doctors failed EMQs and 27-70% failed WUSCEs. The WUSCEs showed three performance trends; 30% of FY1 doctors consistently performing poorly, 50% performing around the passing score, and 20% performing consistently well.  Categorical rating of the WUSCEs revealed 5% (8/161) of scripts contained errors deemed as potentially lethal.

Conclusions

This study shows that a large proportion of FY1 doctors fail to demonstrate the level of CPT knowledge and prescribing ability required at this stage of their careers. We identify areas of performance weakness that pose high risk to patient safety and suggest ways to improve FY1 doctors’ prescribing.

The aim of Dr Rupert Jones and collegues (including me) was to derive a multi-component assessment index for use with patients with COPD to gain a measure of severity. The index was intended to include items that are clinically important, applicable to all grades of disease severity and all healthcare settings, and simple and clear to use.

Traditionally, the forced expiratory volume in one second (FEV1) has been the main measure of COPD severity for clinicians and still has a prominent place in international guidelines. While patients are mainly concerned with symptoms, exacerbations and functional capacity, airflow obstruction is important to clinicians in order to measure the lung damage and determine treatment. A composite measure could account for various dimensions of the disease, and take into account both the patient’s and the physician’s perspectives.

One highly regarded composite measure is the BODE index which was originally designed to predict mortality in COPD. However, the BODE index involves a Six Minute Walking Test (6MWT) which limits its use in routine clinical settings as it takes time, supervision, and space. Another validated prognostic index, the COPD Prognostic Index is also cumbersome to use in routine clinical settings as it includes seven items, one of which is a health status questionnaire.

Therefore we have derived and validated a composite index of severity in chronic obstructive pulmonary disease, which has recently been accepted for publication by the American Journal of Respiratory and Critical Care Medicine.  We hope the index will be widley adopted by the medical profession.

If you are unsure of its relevance or usfulness to your practice, below is the abstract associated with the journal article.

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Rationale: COPD is increasingly recognized as a multi-component disease with systemic consequences and effects on quality of life. Single measures such as lung function provide a limited reflection of how the disease affects patients. Composite measures have the potential to account for many of the facets of COPD.

Objective: To derive and validate a multi-component assessment tool of COPD severity which is applicable to all patients and healthcare settings.

Methods/ Measurements: The index was derived using data from 375 COPD patients in primary care. Regression analysis led to a model explaining 48% of the variance in health status as measured by the Clinical COPD questionnaire with four components: dyspnea (D), airflow obstruction (O), smoking status (S) and exacerbation frequency (E). The DOSE index was validated in cross-sectional and longitudinal samples in different healthcare settings in Holland, Japan, and the United Kingdom.

Main results: The DOSE index correlated with health status in all datasets. A high DOSE index score (> = 4) was associated with a greater risk of hospital admission (odds ratio 8.3 (4.1 – 17) or respiratory failure 7.8 (3.4 – 18.3). The index predicted exacerbations in the subsequent year (p ≤ 0.014).

Conclusions: The DOSE index is a simple valid tool for assessing the severity of COPD. The index is related to a range of clinically important outcomes such as healthcare consumption and predicts future events.

I jokingly asked if Psychology could help the leaning tower and we concluded that the research I was offering up for scrutiny probably wouldn’t.

However the “Inclined Tower“, as a Swiss friend calls it, offers up an obvious, and visual, comparison with some of the benefits from attending conferences.

Its actually quite unusual to learn astounding new facts at academic conferences. Most of the formats involved are just too short and the programme too crowded to allow for a long and detailed examination of new research (that’s what Journal papers are really for). In Pisa there were nearly 1,300 separate pieces of research being presented, either in 15 min oral presentations, posters, symposia, or round table discussions. And all this over 4 days [programme in pdf format].

While you may not spend a lot of of time learning new material, you are forced to look at things from new angles and applying your thoughts and feelings in new ways.  In other words from a ‘New Perspective’!

You’re exposed to the work of people with very different, though equally valid, research philosophies.You can see how they tackled similar questions but from different perspectives (sometimes wildly different).

Studies in psychology provide and require multiple perspectives to be applied in order to understanding people as individuals and as individuals in a community. Research findings and implications about the mind and mental processes as well as studies of the development and behaviour, maintenance and change of socially significant behaviour are all of importance in understand and explaining (at least in part) the world we live in and how we situate ourselves within it.

p.s. John here, I sat in on some of the presentations and there were a couple of very interesting points. Traditionally the shift change in hospitals has been seen as a vulnerability and has resulted in a culture of long shifts. Some research indicated that safety might actually be improved with more shift changes, since they were more often catching problems than causing them. It was the act of explaining what was going on to someone new, a fresh pair of eyes, that caught these oversights. Equally, they sometimes gave people the impetus to make a decision. For a start up company that’s charging along eyes on the prize, taking time out occasionally to explain that bigger picture to an impartial observer, is a huge benefit.

It was also notable the lack of technology awareness in health care messages and communications. Not just the use of social media but viral gaming, mobile data capture & evaluation, and general webbiness. As I tweeted from the conference (I was in the minority having a mobile data device with me), online avatars working from fixed scripts do not make for very convincing ‘companions’. There is a lot this community could learn from places like the Pervasive Media Studio here in Bristol and the ecosystem around them.

For a technical civil engineering description of the tower and various attempts to ‘straighten’ it check out this page.

As part of Sam’s interest and research into the effect of Oral and Maxillofacial Cancer, and its treatment on patients, she has been investigating the knowledge and attitudes of General Dental Practitioners (GDP).  In particular she was interested in GDP’s expereince of treatment of this patient group following completion of their cancer treatment. So she performed a small postal survey. The results of which have been submitted and accepted for presentation at two conferences (British Assocation of Oral Maxillofacial Surgeon Annual Conference & European Health Psychology Conference Annual Conference).

The abstract accepted for these conferences tell you about the study and the results:

Incidents of Oral Cancer are increasing, coupled with campaigns to raise the awareness of symptoms, diagnosis and treatment. To date, no study has investigated the General Dental Practitioner’s (GDP) frequency of exposure to this type of patient or their current knowledge and attitudes in relation to the treatment and potential complications of these patients post cancer. This study investigated these areas and the requirements/requests for further training and education. A questionnaire was constructed and posted to 183 GDP in the South West (UK), with a stamped returned addressed envelop. A subsequent posting was sent out a month later to the non-respondents. The analysis of numerical data was limited to descriptive statistics using SPSS V16. Free text was analysed using content analysis with the aid of NUD*IST V5. A total of sixty-one percent (n=114) of potential participants responded. On average they had been qualified and registered as GDP’s for 20.5 years. Seventy-Six percent (n=87) of respondents reported having a patient post treatment for oral cancer. Thirty-five percent were not confident treating these patients (depending on their morbidities). The reasons given could be categorised from free text responses as due to; 1) Lack of Training, 2) Poor Communication with the hospital, 3) Finance. A minority of GDPs reported the need for further education on the treatment of these patients and for better communication between themselves and hospital consultants. The findings suggest the need for a larger study to validate this pilot and indicate future interventions with GDPs.

We hope you find this research as interesting as we do, as it has implications for the training of future GDP, and improving the communication betwen patients, GDP and hospital based dentists and surgeons. The hope is that it will improve the treatment of this patient group, reduce the amount of time they have to wait for treatment, as well as the lenght of time they need to have assisted feeding through things such as Percutaneous Endoscopic Gastronomy (PEG) feeding tubes.

As for Psychology helping the Leaning Tower of Pisa. This research probably won’t help, but we’ll keep you informed as to it’s progress once the conference is over!

Resilient people face and manage positive and negative life events. They persist in the face of obstacles and when necessary, accept circumstances that cannot be changed. Resilience provides a buffer to protect us from psychological and physical health consequences during difficult times. Clearly, resilience is a desirable quality and yet all of us experience fluctuations in resiliency throughout our lifetime. Some people never develop resilience. Others are quite resilience but don’t recognise it; they may avoid challenges they could easily surmount. Sometimes resilience is worn down by multiple stressors and challenges.

As with a lot of psychology it seems very obvious when people say it, but it is not until it is clearly thought through and stylishly presented that it really does seem like something anyone could have said.  That is exactly what happened during this workshop. The approach covered integrated knowledge from resilience research and traditional CBT approaches.  If this is an area you practice in I would recommend Christine Padesky book (and if it’s run again the workshop), as it was clearly delivered, making it appear simple to apply the developed models. I will definitely be feeding and sharing the references and resources with my clinical psychology colleagues.  This may not be an approach we use, but as with all good ideas their are elements that I am sure I can and will use, especially in designing future research projects.

The clothes peg is a commonly used (at least in the summer) household object. Most of us have them, though we rarely regard them. They are so basic yet so useful, they have the ability of serving many functions in addition to it’s original one. It can be used to hang stuff, to hold, to fasten, endless number of uses.  The peg is a simple object.

However if you talk to many people within the medical profession a PEG is something very different.

The Percutaneous Endoscopic Gastrostomy (PEG) feedback tube is a safe and effective way to provide food, liquids and medications (when appropriate) directly into the stomach. The procedure is carried out for patients who are having difficulty swallowing. Irrespective of the age of the patient or their medical condition, the purpose of PEGs is to provide fluids and nutrition directly into the stomach.

I’ve been investigating the impact of medical treatment on patients that have had treatment for Oral and Maxillofacial Cancers. Part of this treatment may be the placement of a PEG feeding tube. So how does having a PEG feeding tube effect the Quality of Life (QoL) of this patient group.  I undertook a study to find out, which was presented at conference (2008 British Assocaition of Oral and Maxillofacial Surgeon Annual Conference, 22nd Annual Conference of the European Health Psychology Society and 6th International Head & Neck Quality of Life Workshop).  An overview of this study is given below.

A Qualitative Investigation into the Impact of PEGs

Research by the Maxillofacial Department at Derriford Hospital in Plymouth has shown an initial reduction in QoL due to the effects and demands of treatment as measured by the questionnaires. But patients want to add detail about specific areas of concern to themselves. One of these issues is the use of PEGs. The aim of this work was to explore the views of patients regarding the impact of having a PEG in-situ.

Ten patients were recruited prior to treatment for Head and Neck Cancer. They participated in a semi-structured interview and then completed the University of Washington and EORTC-C30 and HN35 QoL questionnaires to ensure comparability with previous studies. Follow-up data was collected at 1, 3, and 6 months post treatment.

Data revealed that those participants with a PEG in-situ had issues with clothing, activities, and sex, which were not apparent in those non-PEG participants. All rationalised the placement of the PEG, but expressed a desire for the PEG to be removed in order to more freely socialise, not be restricted in activity and start ‘feeling normal’. Communication with clinicians about the expected duration of use was described as poor. Patients needing new dentures prior to removal of the PEG reported feeling ‘abandoned’ by the hospital and ‘not confident in their dentists’.

This research shows the benefit of interview in adding flesh to the bones of questionnaires. It reveals adverse psychological effects of PEGs and need for better communication between patients and professionals. Investigation into oral rehabilitation is required.

So what next?

As noted, there needs to be better communication between patients and professionals. But the professionals need to be aware of the issues their patients may have.  Therefore this work is currently being written up for publication in peer review journals, and other work is ongoing to investigate the knowledge base of professionals such as General Dental Practitioners that work outside of hospital settings, but that can still have a significant impact of the length of time this patient group require PEG feeding tubes.

1. Disseminating the information you have gathered
2. Keeping the literature up to date
3. Telling your story and defending your position
4. Putting your head above the parapet

Having written your article and had it accepted you feel very pleased with yourself. Even though you have written it for all the above reasons you never really think that anybody is going to read it and take you seriously. But then two things happen:

1. Someone emails you and asks you for a copy of your article
2. You get an email from the journal saying that someone has written to them about your article and asking if you would like to respond

The first feels like flattery, and sometimes leads to conversations and the development of new projects. The second feels like an attack. As such I find it best to read the letter and then sleep on it. Any response that you write needs to be as carefully written as the original article. As with most academic writing it should be reporting of the facts, a justification of the methodology, and a defense of your interpretation of the findings.

Having written your response and sent it back to the journal you still have to wait to see if the editor will accept it for publication and then go through the whole proof reading process.

This is our (jbsh) current position following the publication of: The Ameliorating Effects of Hyperbaric Oxygen Therapy (HBO2) on Quality Of Life in Patients with Maxillofacial Soft Tissue- and Osteo-Radionecrosis.

What happens next? We wait to see if further letters follow, or if future publications support or refute our position. Academia is not a quiet pond of thought and introspection, it is a tempest of investigation driven by desire.

One of the things that I have been involved in numerous times over that period is staffing the stand at the national dive shows. DDRC’s introduction to the world reads ‘DDRC – Is a charity providing support and education for divers and research into the effects of altered pressure environments on humans. It is one of the UK’s busiest recompression facility, and has seen over fifty diving casualties in the past 12 months. DDRC is able to offer internationally recognised training from diving first aid and oxygen administration to hyperbaric medicine and recompression chamber operation. We will have a team (including me) of helpful and informative staff onsite at the dive show to answer any questions you may have about training, research or the work we do.’

On the day we will have some interesting bits of research for you to get involved in.  Graham Samson will be introducing some of his research, which is going towards a PhD.

I’ll be asking people to judge wither they think a number of factors might cause decompression illness.  It is a simple card sorting task with no hard and fast right or wrong responses just subjective judgements.  If you have the chance to visit us at the NEC that would be great.  If you can’t make it then I know all the researchers at DDRC would love your input, and I know I would appreciate you completing my online survey.

See you on the 1st or 2nd of November at the NEC

or please complete my online survey!

(Opens new window and takes you to SurveyGizmo)

Image by Sarge-Jack

Sometimes you can be working on projects for years and you can feel that no substantial outputs are ever going to come from them. Then all of a sudden stuff happens! Sometimes the stuff is further funding, sometimes it is conference abstracts, posters or oral presentations and sometimes you get publications. That is the case here; projects I have been involved with since 2001 have finally got to the point that academic peer review journals are accepting articles for publication.

I have had the good fortune to have four articles accepted so far this year. I have written about the first three and the abstracts can be read in earlier blogs (1 – QoL & Maxillofacial Cancer Patients: 2 – Educational Impact of Pulmonary Rehabilitation: 3 – Personality as a predisposing factor for DCI) on this site and references found on the research page.

The latest article (No. 4) has been accepted for publication in the ‘Journal of Cardiopulmonary Rehabilitation and Prevention’ is and entitled:

The prevalence of posttraumatic stress disorder in patients undergoing pulmonary rehabilitation and changes in PTSD symptoms following rehabilitation

Authors: Jones, RCM., Harding, SA., Chung, M., & Campbell, J.

Abstract: Posttraumatic Stress Disorder (PTSD) is a common serious condition which, although treatable, is often undetected. We aimed to investigate the prevalence of PTSD in patients with chronic obstructive pulmonary disease (COPD) referred to pulmonary rehabilitation and the impact of rehabilitation on PTSD symptoms. Design: cross-sectional and longitudinal surveys. Participants: Patients with COPD attending pulmonary rehabilitation programmes in South West England. Outcome measures:The Posttraumatic Diagnostic Scale (PDS), Impact of Events scale (IES-R), the incremental shuttle walking test, Medical Outcomes Short Form 12 (SF-12), Hospital Anxiety and Depression scale (HADS) and Chronic Respiratory Questionnaire (CRQ-SR). Questionnaires were completed at face to face interviews with participants one week prior to commencing pulmonary rehabilitation and at the end of the programme. 100 participants took part, mean age 68yrs; 65 male. 70% completed the pulmonary rehabilitation programme. Seventy four out of one hundred participants reported traumatic experiences, 37 of which were related to their lung disease. Eight out of 100 participants met diagnostic criteria for PTSD. Participants with PTSD reported worse health status than those without PTSD. After pulmonary rehabilitation, exercise capacity and quality of life scores improved significantly, but PTSD symptom severity did not change. PTSD was present in 8% of COPD patients referred for pulmonary rehabilitation. After rehabilitation, participants with PTSD improved more in respect of anxiety and disease specific health status than those without PTSD. PTSD symptoms did not improve following rehabilitation, despite its positive effects on HADS scores, exercise and health status in this cohort.

Once again I hope you find this of interest and as always please get in touch if you want to discuss or comment about anything in the article.