Kate Rachel Millar, Christopher James, Hannah Headon, Azka Afzal, Joseph Lipton, Kirsten Armit, Judy McKimm
Generic professional capabilities hub: developing leadership and management skills in trainees
BMJ leader
july 2010 medical advisory secretariat mas began work chronic obstructive pulmonary disease copd evidentiary framework evidencebased review literature surrounding treatment strategies patients copd project emerged request health system strategy division ministry health longterm care mas provide evidentiary platform effectiveness costeffectiveness copd interventions initial review health technology assessments systematic reviews copd literature consultation experts mas identified following topics analysis vaccinations influenza pneumococcal smoking cessation multidisciplinary care pulmonary rehabilitation longterm oxygen therapy noninvasive positive pressure ventilation acute chronic respiratory failure hospitalathome acute exacerbations copd telehealth including telemonitoring telephone support evidencebased analyses prepared topics technology economic analysis also completed appropriate addition review qualitative literature patient caregiver provider perspectives living dying copd conducted reviews qualitative literature technologies included analyses chronic obstructive pulmonary disease megaanalysis series made following reports publicly accessed mas website httpwwwhqontariocaenmasmasohtasmnhtml chronic obstructive pulmonary disease copd evidentiary framework influenza pneumococcal vaccinations patients chronic obstructive pulmonary disease copd evidencebased analysis smoking cessation patients chronic obstructive pulmonary disease copd evidencebased analysis communitybased multidisciplinary care patients stable chronic obstructive pulmonary disease copd evidencebased analysis pulmonary rehabilitation patients chronic obstructive pulmonary disease copd evidencebased analysis longterm oxygen therapy patients chronic obstructive pulmonary disease copd evidencebased analysis noninvasive positive pressure ventilation acute respiratory failure patients chronic obstructive pulmonary disease copd evidencebased analysis noninvasive positive pressure ventilation chronic respiratory failure patients stable chronic obstructive pulmonary disease copd evidencebased analysis hospitalathome programs patients acute exacerbations chronic obstructive pulmonary disease copd evidencebased analysis home telehealth patients chronic obstructive pulmonary disease copd evidencebased analysis costeffectiveness interventions chronic obstructive pulmonary disease using ontario policy model experiences living dying copd systematic review synthesis qualitative empirical literature information qualitative review please contact mita giacomini httpfhsmcmastercacebfacultymembergiacominihtm information economic analysis please visit path website httpwwwpathhtacaaboutuscontactusaspx toronto health economics technology assessment theta collaborative produced associated report patient preference mechanical ventilation information please visit theta website httpthetautorontocastaticcontact objective analysis review empirical qualitative research experiences patients chronic obstructive pulmonary disease copd informal caregivers carers health care providersfrom point diagnosis daily living exacerbation episodes end life qualitative empirical studies social sciences clinical related fields offer important information patients experience condition exploration qualitative literature offers insights patients perspectives copd needs interventions might affect experiences experiences caregivers also explored patients copd informal caregivers carers health care providers experience course copd literature search search strategy literature searches studies published january 1 2000 november 2010 performed november 29 2010 using ovid medline november 26 2010 using isi web science november 28 2010 using ebsco cumulative index nursing allied health literature cinahl titles abstracts reviewed single reviewer studies meeting eligibility criteria fulltext articles obtained one additional report highly relevant synthesis appeared early 2011 drafting analysis included post hoc inclusion criteria englishlanguage full reports studies published january 1 2000 november 2010 primary qualitative empirical research using descriptive interpretive qualitative methodology including qualitative component mixedmethods studies secondary syntheses primary qualitative empirical research studies addressing aspect experiences living dying copd perspective persons risk patients health care providers informal carers studies addressing multiple conditions included copd addressed explicitly exclusion criteria studies addressing topics experiences living dying copd perspective persons risk patients health care providers informal carers studies labelled qualitative using qualitative descriptive interpretive methodology eg case studies experiments observational analysis using qualitative categorical variables quantitative research ie using statistical hypothesis testing using primarily quantitative data analyses expressing results quantitative statistical terms studies pose empirical research objective question involve primary secondary analysis empirical data outcomes interest qualitative descriptions interpretations narrative theoretical personal social experiences copd experiences diagnosis patients typically seek initial treatment acute episode rather chronic early symptoms copd many patients initially misunderstand terms copd chronic obstructive pulmonary disease exacerbation patients may realize copd incurable fatal physicians consider early copd fatal disease smokers may readily understand agree idea smoking caused worsens copd believe causal link may feel regret shame experiences living day day copd patients experience alternating good days bad days rollercoaster pattern ups downs becomes apparent copd becomes way life patients use many means social psychological medical organizational control cope cannot economic hardship comorbidities language barriers low health literacy make coping difficult increasing vulnerability unpredictable setbacks make patients dependent others practical assistance functional limitations institutional living selfconsciousness isolate patients people need smokers medical advice quit conflict increased desire smoke coping strategy many factors isolate copd patients social contact also isolate health care experiences exacerbations patients may always attribute repeated exacerbations advancing disease instead seeing temporary setbacks caused activities environmental factors faltering selfmanagement infection lack confidence communitybased services leads patients seek hospital admission patients also feel vulnerable hospitalized may feel dependent others care traumatized hospital care routines upon hospital discharge following exacerbation patients may face new levels uncertainty illness prognosis care providers supports experiences end life patients tend poorly informed longterm prognosis copd expect toward end life lack understanding impairs quality life disease progresses end life approaches copd patients face usual challenges daily living context increasing exacerbations deepening dependency activities mobility decrease life may become confined clinicians difficulty identifying beginning end life given unpredictable course copd longterm physicianpatient relationships familiarity understanding trust good communication skills sensitivity secure discussion settings help facilitate endoflife discussions divergent meanings goals palliative care copd lead confusion whether services responsibility home care primary care specialty care even critical care palliative endoflife care may anticipated prior referral care palliative care referral convey demoralizing message providers given experiences carers carers challenges often echo patients challenges include anxiety uncertainty future helplessness powerlessness depression difficulties maintaining employment loss mobility freedoms strained relationships growing social isolation carers feel pressured many roles struggling maintain patience feel overwhelmed often feeling guilty enough carers often face health problems may difficulty sustaining employment synthesis disease trajectory reflecting patient experiences flux needs copd calls service continuity flexibility allow health care providers patients respond unpredictable yet increasing demands disease time