Integrating the patients' voice in designing and delivering a research study: The Yorkshire Cancer Research funded PREHABS study's experience.

INTRODUCTION: Engaging with patients when designing a clinical or research project is beneficial; feedback from the intended audience provides invaluable insight form the patients' perspective. Working with patients can result in developing successful research grants and interventions. The benefit of including the voice of the patient in the Yorkshire Cancer Research funded PREHABS study is described in this article. METHODS: Patients were included in the PREHABS study from inception to completion. The Theory of Change methodology was used to provide a framework to implement patient feedback to refine the study intervention. RESULTS: In total, 69 patients engaged with the PREHABS project. Two patients were recruited as co-applicants on the grant and were members on the Trial Management Group. Six patients attended the pre application workshop and provided feedback on their lived experiences of being a lung cancer patient. Commentary from the patients influenced the interventions selected and the design of the prehabs study. Following ethical approval (21/EE/0048) and informed written consent, 61 patients were recruited into the PREHABS study between October 2021 and November 2022. The breakdown of recruited patients was 19 males: mean age 69.1 years (SD 8.91) and 41 females; mean age 74.9 years (SD 8.9). CONCLUSION: It is practicable and beneficial to include patients at all stages of designing and delivering a research study. Patient feedback can help refine the study interventions to allow for maximum acceptance, recruitment and retention. IMPLICATIONS FOR PRACTICE: Including patients in the design of radiotherapy research studies can provide invaluable insight that can support the selection and delivery of interventions that are acceptable to the patient cohort.

Prehabilitation and Rehabilitation for Patients with Lung Cancer: A Review of Where we are Today.

Lung cancer is the third most common type of cancer in the UK, with nearly 50 000 new cases diagnosed a year. Treatments for lung cancer have improved in recent years with the advent of new surgical and radiotherapy techniques and the increased use of immunotherapies. These advances have resulted in increasing numbers of patients surviving beyond the completion of their treatment. Lung cancer patients are now not dying from their cancer diagnosis, but from other co-existing pathologies. Lung cancer patients commonly present with multiple comorbidities. Mitigating the effects of poor lifestyles and changing behaviours may improve the efficacy of treatments, reduce side-effects and improve the quality of life for lung cancer patients. Published evidence supports the use of interventions to manage behavioural habits, to optimise the health of patients. There is no consensus as to what, when or how to embed these into the patient pathway. Supporting patients before, during and after their cancer treatments to increase activity, eat well and stop smoking have been seen to decrease side-effects and improve patient outcomes and wellbeing. The challenge is to provide a package of interventions that is acceptable to patients and fits within the patient pathway so as not to conflict with diagnostic and therapeutic activities. This article reviews where we are today with providing behavioural support to optimise the health of lung cancer patients undergoing treatment.

Changes in Patient-reported Swallow Function in the Long Term After Chemoradiotherapy for Oropharyngeal Carcinoma.

AIMS: To assess long-term patient-reported swallow function after chemoradiotherapy for oropharyngeal carcinoma and to evaluate the frequency of deterioration/improvement over years. MATERIALS AND METHODS: Fifty-nine patients with oropharyngeal carcinoma treated with parotid-sparing intensity-modulated radiotherapy and concurrent chemotherapy between 2010 and 2012 had previously completed the MD Anderson Dysphagia Inventory (MDADI) at a median of 34 months (range 24-59) after treatment. An MDADI was posted to 55 alive and disease-free patients after a 30 month interval; 52/55 replies were received, a median of 64 months (range 52-88) after treatment; 27/52 (52%) had been managed with a prophylactic gastrostomy. A 10 point or greater change in the MDADI scores was defined as clinically significant. RESULTS: Overall, in the whole cohort, patient-reported swallow function showed a small absolute improvement in MDADI composite score on the second MDADI questionnaire (>5 years after treatment) compared with the first MDADI (>2 years after treatment); mean 68.0 (standard deviation 19.3) versus 64.0 (standard deviation 16.3), P = 0.021. Using the composite score, swallow function was stable over time in 29/52 (56%) patients; a clinically significant improvement in swallow function over time was noted in 17/52 (33%) patients; conversely 6/52 (12%) patients experienced a clinically significant deterioration with time. Abnormality of pre-treatment diet and a prophylactic gastrostomy correlated with an inferior MDADI composite score on the later questionnaire (P = 0.029 and P = 0.044, respectively). CONCLUSIONS: Long-term dysphagia is prevalent >5 years after treatment. Although long-term swallow function is stable in most patients, it is not static in a minority. On MDADI composite summary scores, 33% of patients experienced an improvement, whereas 12% deteriorated with time. Further investigation is needed to determine underlying mechanisms behind these divergent outcomes.

Methanol poisoning: a review and case study of four patients from central Australia.

Methanol intoxication, a rare and potentially lethal form of poisoning, usually results from ingestion and occasionally inhalation of methanol. Initial symptoms of blurred vision, elongated anion gap and metabolic acidosis are typically delayed and may not at first be recognised as methanol-related complaints. Once diagnosed, treatment must be prompt and definitive. As well as general supportive care, ethanol infusion, dialysis and alkalinization from the mainstays of treatment. The cases described in this paper are compared to previous reports from other countries worldwide and contrast the variance in outcome often seen in methanol poisoning. The paper describes two tragic deaths and two lucky survivors, all of whom had consumed a cocktail of methanol and other alcoholic beverages at the same party. The ICU nurse's role in managing the methanol-intoxicated patient relies on that person's sound knowledge of the unusual biochemical reactions occurring in the body and the need to institute definitive and supportive measures to help both patient and family recover.

Serum deoxycytidylate deaminase as an index of high-risk pregnancy.

Serum deoxycytidylate deaminase (EC 3.5.4.12, dCMP deaminase) activity was routinely estimated over 7 years in 2460 pregnancies. The results confirm that elevated dCMP deaminase activity (greater than 4.8 units) is associated with the development of pre-eclampsia but not with essential hypertension in pregnancy; a high rising level can precede eclampsia. Elevated enzyme activity was also found in women who developed jaundice in pregnancy and in some with apparently normal pregnancies. An unexpected finding was that these so called 'false positive' high levels were associated with all the unexplained intrauterine fetal deaths that occurred later in pregnancy. Although elevated dCMP deaminase levels may be associated with a normal outcome, persisting high levels indicate the need for careful monitoring of fetal well being and, in the presence of any other sign of placental insufficiency, delivery should be expedited.

Activity of serum cytidine deaminase during pregnancy.

A simple and reliable method for the estimation of cytidine deaminase (cytidine aminohydrolase; EC 3.5.4.5) activity in pregnancy serum is described. This enzyme does not require magnesium for activation and is also more stable than deoxycytidylate deaminase (dCMP deaminase, dCMP aminohydrolase; EC 3.5.4.12). There was excellent correlation between the two enzymes (r = 0.92). Both enzymes showed increased activity in abnormal pregnancy. Both enzymes activities were found to be similar in 1305 maternal serum samples and therefore due to the simplicity of cytidine deaminase estimation it is recommended for the screening of large numbers of antenatal sera for abnormal pregnancies.

The social function of young adults who had arthritis in childhood.

One hundred twenty-one young adults 18 years of age or older who had been seen at this hospital with juvenile arthritis since 1955 were surveyed by a series of questionnaires to determine current social function and financial status. Chart reviews and patient questionnaires were used to determine modes of onset and the social circumstances of the family at the onset of the arthritis. The patients as a whole were functioning well: 45 were working full time, 25 were in school full time, 23 were in school and working, and 14 were married women at home. Females had a higher prevalence of persisting disability. Patients who had had a polyarticular onset had lower monthly salaries. No other disease or social variables at onset were statistically associated with any of the outcome variables measured. Fifty of the patients were compared to matched siblings and were found to have achieved comparable educations and salaries, and proportionate numbers of marriages and children.

Plasma urate and serum deoxycytidylate deaminase measurements for the early diagnosis of pre-eclampsia.

The value of measuring plasma urate and serum deoxycytidylate deaminase (dCMP deaminase) for the early diagnosis of pre-eclampsia has been investigated in 45 patients. A combination of increased blood pressure and increased plasma urate identified 19 patients with a high incidence of fetal and maternal morbidity ascribable to pre-eclampsia. Seventeen of the 19 patients also had an increased serum dCMP deaminase. Serial antenatal observations for a mean period of 104 days (36-179 days) on 33 of the patients demonstrated that plasma urate and serum dCMP deaminase increased together as early changes in the development of pre-eclampsia. In six patients, blood pressure, plasma urate and serum dCMP deaminase all increased but in only one was the rise in blood pressure the first change. Elevations of plasma urate and serum dCMP deaminase are therefore both early features of pre-eclampsia. Serial measurements can give warning of the disorder before the appearance of other clinical features. The change in dCMP deaminase is probably another reflection of early renal involvement in the pre-eclamptic process.

A rapid method for the determination of deoxycytidylate deaminase activity in pregnancy serum.

A method is described for determining the activity of deoxycytidylate deaminase in serum. The ammonia liberated from deoxycytidine monophosphate has been specifically determined by enzymatic amination of alpha-ketoglutarate using glutamate dehydrogenase. The concurrent oxidation of NADH2 at 340 nm was proportional to the ammonia liberated from deoxycytidine monophosphate. Using the technique described, a result would be available to the clinician in under 4.5 h. The "normal activity" for deoxycytidine deaminase in normal male, female and pregnancy sera has been determined.

Deoxycytidylate deaminase in pregnancy.

Deoxycytidylate (DCMP) deaminase was assayed at various times during and after normal and abnormal pregnancies. The level in amniotic fluid was assessed at induction and at caesarean section, and cord blood levels were estimated after normal delivery and at caesarean section. A rise occurred during labour and after hysterectomy and caesarean section--returning to normal after 2-3, and 12 days respectively. Levels above 4.8 X 10-minus 4 ml-minus 1 were found in cases of preeclamptic toxaemia and early intrauterine death and in twin pregnancies over 36 weeks' gestation. It is suggested that because of its low incidence of false-negative and false-positive results this test is far superior to other enzyme tests in pregnancy, and a further trial is in progress to assess its role.

The serum activity of glucose-6phosphatase and 5'-nucleotidase during human pregnancy.

An attempt has been made to show that the increase in enzyme activities in sera of pregnant women found with glucose-6-phosphate and adenosine 5'-monophosphate as substrates (described as glucose-6-phosphatase and 5'-nucleotidase) was due to the increase in alkaline phosphatase. The three enzyme activities has pH optima and heat stability characteristics of alkaline phosphatase. The response to the action of inhibitors and activators was typical for alkaline phosphatase. There was an identical increase in all three enzyme activities during pregnancy. As a control similar investigations were made with liver and placental tissue extracts.

Source of the pregnancy serum N-acetyl-beta-glucosaminidase isoenzyme during human pregnancy.

The antisera to the A and B isoenzymes found in placenta and fetal liver were raised in rabbits. No antigenic difference was found between the fetal liver and adult tissue isoenzymes. Antisera to the placental isoenzymes did not react with the isoenzymes of adult tissues. The antibody raised against the placental B and fetal B liver isoenzyme decreased the N-acetyl-beta-glucosaminidase activity in maternal serum at 38 weeks gestation to the value found in normal human serum. Immunological evidence has been presented that the isoenzyme of N-acetyl-beta-glucosaminidase found only in pregnancy serum was of placental origin.