Assessment of Distress with Physical and Psychological Symptoms of Patients in German Palliative Care Services

Background: Within the framework of the nationwide Hospice and Palliative Care Evaluation (HOPE), the German Basic Documentation for Psycho-oncology (PO-Bado) was used from 2004 to 2006 as an optional module in most participating palliative care services to investigate how patient distress due to symptom burdens in different palliative care settings should be assessed and how professional interventions could be derived. Patients and Methods: The distress scores of 3,317 PO-Bado records out of a total of 6,958 consecutive participants from 3 yearly samples of HOPE were evaluated descriptively and compared with a reference sample of cancer patients from both general and university hospitals. Results: The relative values of distress from physical and psychological symptoms were 0.57 and 0.37 (maximum of 1.0), respectively. In 38.2% of the patients, professional psychosocial interventions were indicated. Compared to the reference sample of cancer patients, palliative care patients clearly showed more specific physical distress, but psychological symptoms were varied; in particular, distress from cognitive impairment, helplessness and grief showed higher intensities in palliative care patients than in the reference group. Conclusions: The PO-Bado rating scales assessed high levels of distress, particularly from physical symptoms, in palliative care patients. A large percentage of palliative care patients required professional psychosocial support.


Keywords
Palliative medicine · Psycho-oncology · Distress screening Summary Background: Within the framework of the nationwide Hospice and Palliative Care Evaluation (HOPE), the German Basic Documentation for Psycho-oncology (PO-Bado) was used from 2004 to 2006 as an optional module in most participating palliative care services to investigate how patient distress due to symptom burdens in different palliative care settings should be assessed and how professional interventions could be derived. Patients and Methods: The distress scores of 3,317 PO-Bado records out of a total of 6,958 consecutive participants from 3 yearly samples of HOPE were evaluated descriptively and compared with a reference sample of cancer patients from both general and university hospitals. Results: The relative values of distress from physical and psychological symptoms were 0.57 and 0.37 (maximum of 1.0), respectively. In 38.2% of the patients, professional psychosocial interventions were indicated. Compared to the reference sample of cancer patients, palliative care patients clearly showed more specific physical distress, but psychological symptoms were varied; in particular, distress from cognitive impairment, helplessness and grief showed higher intensities in palliative care patients than in the reference group. Conclusions: The PO-Bado rating scales assessed high levels of distress, particularly from physical symptoms, in palliative care patients. A large percentage of palliative care patients required professional psychosocial support.

Introduction
Distressandemotionalstrainarerelevanttopatientswhoare undergoing palliative and hospice care. Until recently, few studieshavefocusedonspecificpsychosocialdistressandcomorbidity in patients with advanced cancer and terminal stagesofdiseases.Forthemostpart,thesestudiesreferredto psychiatricdiagnosesofmentaldisorders [1],whilestaffmembersinhospiceandpalliativecaresettingsarefacedwithpatients who experience the fear of pain, increasing dyspnoea, hopelessness, and grief and anxiety about burdening their families or relationship conflicts that are irresolvable in the shortterm.Ingeneral,theseproblemsdonotmeetthecriteria for psychiatric disorders according to ICD or DSM, but theydorequireprofessionalinterventions [2,3].Incommon definitionsofpalliativecare,thepsychosocialsupportinadditiontomedicaltreatmentisoftenhighlightedasanimportant partofthe'holisticapproach'ofmodernpalliativemedicine andpalliativecareinstitutions [4].However,inasurveythat included the majority of palliative care units in the German HospiceDirectory [5],considerabledifferenceswerefoundin bothsymptomburdenandsupply [6].Inthisstudy,weassessed thelevelsofemotionaldistressofin-patientsandout-patients with standardised instruments and uniform rules. The study wasperformedaspartoftheyearlyevaluationperiodsofthe nationwide quality assurance project HOPE (Hospice and Palliative Care Evaluation). The following main topics were addressed: i) How much do palliative and hospice patients sufferfromphysical,psychological,andsocialsymptomscomparedtocancerpatientsingeneralhospitalsandcentresfor rehabilitation?ii)Howoftenisprofessionalpsychosocialsupportindicatedamongdifferentservices?iii)Isthebasicdocumentation for psycho-oncology (PO-Bado) a reliable instrumenttoassessdistressinpalliativeandhospiceservices?How does it compare to the HOPE core documentation? Does it addusefulinformationtotheHOPEcoredocumentation?

The HOPE Survey
The German nationwide HOPE survey was based on a documentation period of up to 90 days per year [7]. In each service, up to 30 patients weredocumentedconsecutively.Startingin2002,generaloncologywards and hospices participated, and starting in 2004, medical practices and homecarenursingservicesparticipated.TheHOPEcoredocumentation form includes demographic data, information about disease stage, and diagnoses(ICDorfreetextentry),co-morbidity,andthesupplyofcare. Checklistsforphysical,nursing,andpsychosocialsymptomsandinterventionswereincluded,aswereissuesabouttheendofcare.Symptomintensitywasassessedwithcategoricalscales(none,slight,moderate,severe). TheHOPEcoredocumentationformswerecompletedbothatthetime of admission and at the time of discharge, but staff members were also freetocompletethemweekly.

Basic Documentation for Psycho-Oncology
The PO-Bado was developed from 2000 to 2006 in collaboration with the German Association of Psycho-Social Oncology (DAPO) and the 'ArbeitsgemeinschaftfürPsychosozialeOnkologie(PSO)'oftheGerman Cancer Society, sponsored by German Cancer Aid. The psychometric validity of the PO-Bado was shown through correlations with the EORTC-Quality-of-Life-QuestionnaireQLQ-C30,theHospitalAnxiety andDepressionScale(HADS),andtheGermanQuestionnaireonStress inCancerPatients(QSC-R23).Thequestionnairecontainsdemographic and psychosocial stress data, a manual with interview guidelines and a softwareapplicationforstatisticalanalyses,whichconsistsofadatabase that includes more than 7,000 records from different settings (patients in different hospitals, cancer centres, and centres for rehabilitation). Astandardisedexpertratingwaspreparedtoassesspsychosocialandadditional stresses, the former using 5-point Likert scales, and the latter using 2-point ('Yes' vs. 'No') assessment scales. Three specific physical distress factors and a free text field were predefined. A sum score was calculatedwithamaximumof16points.Asecondsumscorecomprised 7specific,predefinedpsychologicaldistressfactorsandafreetextfield, withamaximumof32points.Theratingwascompletedwiththeassessment of additional stressors related to social aspects and the indication forprofessionalintervention [8].

Data Analysis
Samplehomogeneitywasexaminedbycomparingdemographicandmedical data within the survey periods with t-tests and F-tests. Then the recordsfromtheoptionalPO-Badomoduleatadmissionwerecompared with a reference sample, collected from 2003 to 2006, which included 5,101patientsfromoncologywardsingeneralhospitals,cancercentres, and centres for rehabilitation (kindly provided by the aforementioned editors of the PO-Bado). This sample included and corresponded to publisheddataofHerschbachetal. [9]butwasusedforthisevaluation because it also differentiated between treatment settings and physical andpsychologicalsumscores.Tocomparethephysicalandpsychosocial loads of patients, the two total scores were converted to a 0-1 relative scale that was independent from the number of items in question. For sumandrelativescores,nomissingdatawereaccepted.Thecorrelation ofsymptomdistressinPO-Badorecordswithcorrespondingsymptomintensity in HOPE core documentation at admission was calculated by Spearman'srankcorrelation.Theseverityofphysical/psychosocialstress andawarenessoftheneedforprofessionalinterventionwererelatedto thecaresettingbyamultivariateanalysis.Allstatisticalevaluationswere performedusingSPSSsoftware(versions17and18).

Distress Concerning Physical and Psychosocial Symptoms in Different Care Settings
The highest distress values were reported for the physical symptoms 'restrictions in daily activities' and 'fatigue' and for the psychological symptoms 'helplessness' and 'anxiety/ worries'. Patient distress scores differed in different care settings ( fig. 1). Distress related to physical symptoms was rated higher in all settings of the HOPE survey compared tothereferencegroup.Distressfrompsychosocialsymptoms relatedto'cognitiveimpairment','helplessness','grief/depression',and'shame'werefoundtobehigherinspecialisedservicessuchaspalliativecareinpatientunits,hospices,andhome carenursingservicesthaninoncologywardsormedicalpractices as well as in the reference group. Distress related to 'mood swings', 'anxiety/worries', and 'sleep disturbance' showed no differences among services or in the reference group. The sum score of distress related to psychological

Discussion
This study presents for the first time a systematic survey on thesubjectiveexperiencesofalargenumberofpatientsina large number of palliative care services in different settings. In combination with descriptions of symptom intensity from the results of the HOPE core documentation form, the PO-Badorecordsprovidearichsourceofinformationaboutthe physicalandemotionalaspectsofpalliativecarepatients.
On average, patients in the PO-Bado/HOPE survey were 10 years older than patients in the reference group. The patientsoftheHOPEsurveysufferedfromtypicalproblems relatedtoadvanceddisease,predominantlyfunctionalimpairmentandtheneedfornursingsupport [14].Theprofileofdistress factors included in the PO-Bado accurately describes patientsreceivingpalliativecare.

Additional Stress Factors and Indications for Professional Psychosocial Support
Approximatelyonethirdofthepatientsstatedthattheirdistress was related to problems with family and friends. One quarterofthepatientsexplainedthatindependentstressfactorsthatwereunrelatedtotheirdiseaseswererelevant.Both ofthesestressfactorsshowedconsiderabledifferencesamong thevarioussettings.Anindicationforprofessionalpsychoso-cialsupportwasdocumentedfor38.2%ofpatients.Theindication was established more often for patients with higher distress scores that were related to psychological symptoms comparedtothosewithlowerscores( fig.2),buttherewere significantdifferencesamongsettings.Oncologywardsascertainedtheneedforprofessionalinterventionfordistressfrom psychologicalsymptomsbyameantotalscoreof0.39,palliative care units by a mean score of 0.47, and hospices by a meanscoreof0.55( fig.2).Ofpatientswhohaddiagnosesof mental disorders (ICD-10 chapter V) (258, or 7.8%), 41 received indications for professional support. The indications were more closely related to setting than to gender, total score,orECOGperformancestatus.

Correlations Between the Symptom Checklists of the HOPE Core Documentation Form and the PO-Bado Assessment
The symptom checklist of the HOPE core documentation formassessestheintensityofphysicalandpsychologicalsymp- The correlation analysis showed an expected mismatch between symptom intensity, as assessed by the HOPE core documentation, and distress, as assessed by the PO-Bado score,evenwhenthesameterms(i.e.'pain')wereused.The difference between symptom intensity and the subjective experienceofdistresshasalreadybeenestablished [15,16].If an evaluation of patient experiences is required (benefiting from an expert rating), then the results of the HOPE core documentationformneedtobesupplementedwithinforma-tionfromthePO-Bado.Thenoteddifferencesbetweensymptom intensity and distress factors have an impact on clinical decisionmakingfortreatmentandsymptomcontrol.
WithinthePO-Badoquestionnaire,thetherapeuticconsequences that may arise from patients' personal experiences andthoseoftheircaregiversareimplicatedonlyinthefinal question: whether professional psychosocial support is indicated. According to guidelines [17], the editors of the PO-Bado specify 'professional psychosocial support' as a minimumofonecontactbyasocialworker,therapist,orphysician with special qualifications, who can assess whether an improvementinthepatient'squalityoflifebypsycho-oncologic therapy is expected or whether a specific psycho-oncologic examination is required for clarification [18]. The German Cancer Society currently recommends the PO-Bado as a screening instrument to assess the requirement for professionalpsycho-oncologicsupport [19].

Conclusions
TheresultsofthePO-Badorecordsprovidedinformationon specific distress types that were related to the symptoms of patientsreceivingpalliativecare.Thedistressprofilediffered fromthereferencedataofthePO-Badoingeneraloncology wards, as patients in palliative care settings are often more advanced in their disease trajectories, are older, are more impaired, and have greater nursing needs. There was only slight evidence of correlations between symptom intensity according to the HOPE core documentation and subjective distress experiences according to PO-Bado scores. Services wereshowntoadvancetheindicationforprofessionalpsychosocialsupportatdifferentseveritiesandtimepoints,e.g.occurringwiththehighestseverityinhospices;thesedifferences maydependontheavailabilityofappropriatestaffmembers. Potential under-recognition and underassessment of distress inseveralservicesmaybecausedbyamistaken'holistic'concept.Infact,staffmembersinpalliativeandhospicecareservicesarenotreleasedfromdetectingandattendingtopatients' psychosocialneeds,butinthissample,almost40%oftheinterviewed patients needed specialised psychosocial support, eveniftheirdistresswaspredominantlyrelatedtotheirphysical symptoms. Hospice and palliative care services should generate common standards for supplying psychosocial support,similartothoseofcertifiedcancercentres [20].Forthis purpose,thePO-Badocouldbeaveryusefulinstrument.